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Alfie Evans 6

999 replies

CamomileTeaShotofVodka · 26/04/2018 01:49

Following on from the last thread. If there's one already please do delete this one.

Remember not to speculate or make negative comments about the family or discussions will be stopped.

Thoughts are with Alfie tonight Star

Such an important and sensitive topic.

OP posts:
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Thespringsthething · 26/04/2018 09:09

Ashya King’s parents have reduced his long term survival by 30%

I don't know how any report could conclude this, because the individual prognosis is not an average whatsoever and individuals often vary around that enormously.

I do not agree with this assessment of the AK debacle at all. First off, had the UK actually had proton beam therapy to offer the child, then there wouldn't have been a delay in treatment which may have compromised long-term survival, because both options would have been on the table from the start. The NHS is now hurrying to provide it, mindful that it is shameful other countries in Europe have it and use it for that type of tumour as it minimizes collateral brain damage. We come really low down the table for European survival rates and time to diagnosis and time to treatment is undoubtedly behind that. Second, what was being offered, if I understand correctly was whole brain radiotherapy (the kind that causes cognitive impairment, short term memory loss and if repeated a lot, dementia). It's not wrong to seek a second opinion or consider alternatives when the side effects may damage a child's brain for life- perhaps they then decided better to compromise long-term survival for short-term preservation of function given proton beam therapy is quite new (so I don't see how you can categorically state the 30% less likely given presumably we don't have massive clinical trials which deny children radiotherapy as a control group, or compare long-term proton beam outcomes).

Finally- perhaps over time they decided chemo was the right course of action but again, many people do decide not to go for this option of intense illness against future survival. That's the type of very difficult decision making that needs to be weighed up which is why calling social services/getting a European warrant is totally inappropriate as a way to handle such cases.

The report that states survival etc- well, I read (and sometimes write) reports like this all the time that back to the hilt the current state of play. But whole brain radiotherapy and chemo is intensely crude and very damaging as a therapy, and seeking alternatives which are more targeted is not, of itself, a crazy thing to do.

The fact that the child is back at school and hasn't suffered significant brain damage and is in remission three years later (which is simply amazing for a very aggressive tumour) kind of proves the parents' point IMO. I would have sought such options if I had a child with similar prognosis, I wouldn't just crack on and do the first thing the NHS suggested because they are not actually always world experts (depending who your local consultant is) and they don't have all the full range of newer technologies open to them. Having looked at the evidence for a child, I probably would go ahead with chemo, which I think they eventually did, but am not sure about that.

In this instance (AE), I do agree that enough experts (including international ones) have been consulted and the parents are in complete denial, so it is a different case.

TheHodgeoftheHedge · 26/04/2018 09:09

Absolutely @SoupyNorman

MorningsEleven · 26/04/2018 09:10

FreshTart Flowers so sorry for your loss, you were very brave.

endofthelinefinally · 26/04/2018 09:10

Losing a child is the worst thing that can happen to a parent.
I know that paramedics tried for 40 minutes to resuscitate my son. I am thankful I wasn't present. I know that had he survived he would have been severely brain damaged with no quality of life.
I grieve for him every moment of every day, but I would not wish that life for anyone.
My heart breaks for Alfie's parents, but I hope they can find the strength to let him go.

MorningsEleven · 26/04/2018 09:12

endofthelinefinally Flowers sorry for your pain.

Justaboy · 26/04/2018 09:12

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SusanWalker · 26/04/2018 09:13

Only yesterday someone was caught trying to smuggle in a ventilator in a suitcase. I don't see how poor Alfie can go home.

TheHodgeoftheHedge · 26/04/2018 09:14

Further from TE this morning:
He added: "Alfie doesn't need intensive care any more. Alfie is lying on the bed with one litre of oxygen going into his lungs and the rest is him.
"Some people say it's a miracle, it's not a miracle, it's a misdiagnosis."

CocoaGin · 26/04/2018 09:14

Freshtart you were able to put your childs needs before your own. You should be hugely proud of that. I'm also glad that you were given answers about why, even though that took a while.

I didn't want a post mortem on our son, but DH was very determined that we should in case of something that would affect future pregnancies. Nothing was found, it was inconclusive and that was so so hard to deal with at the time, but years of acceptance have made me realise that actually something was very very wrong, healthy babies don't die for no reason and that we just will never know. I think the families idea of there being no diagnosis isn't helping them at all.

MarvelleGazelle · 26/04/2018 09:14

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FreshTart · 26/04/2018 09:15

Thank you to you all and Flowers endoftheline

Unfortunately Ive tried to explain some of the more medical aspects of this case to 'friends' on facebook and have been called some dreadful names and suggestions made I didnt love my son as much as TE loves Alfie. Im not the only one either. It has created such a divide that I fear those who are in this situation will never be able to speak freely and gain the sympathy, empathy and help they need. That is an awful thing to leave behind.

jaseyraex · 26/04/2018 09:15

FreshTart so sorry for your loss Flowers
My experience was pretty similar. My son was born with a heart problem that had gone undetected on scans before birth. No one knew what it was despite having every test and scan under the sun. He was 3 days old when he was put on support, and 3 weeks old when we turned it off. They diagnosed the condition months after his death but it didn't matter. It didn't need a name. The facts were there regardless. I'll never regret my decision to let him go.

whiteradiator · 26/04/2018 09:16

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Stormy76 · 26/04/2018 09:16

I can't think of anything worse than losing a child. Freshtart I cannot believe that anyone would think you were a murderer, you acted in your child's best interests. Endofthline heart goes out to you both I cannot imagine a worse pain than losing a child. ❤️

Stormy76 · 26/04/2018 09:18

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numptynuts · 26/04/2018 09:18

Unfortunately Ive tried to explain some of the more medical aspects of this case to 'friends' on facebook and have been called some dreadful names and suggestions made I didnt love my son as much as TE loves Alfie. Im not the only one either. It has created such a divide that I fear those who are in this situation will never be able to speak freely and gain the sympathy, empathy and help they need. That is an awful thing to leave behind.*

And that is exactly why this frenzy needs to stop. It's hurting a lot of people. This is abhorrent.

I'm so sorry for your loss Fresh Thanks

user1457017537 · 26/04/2018 09:19

Thank you The Spring

Dinosaurchicken · 26/04/2018 09:19

Fresh that is disgusting. I don’t even have words strong enough to express how vile that is to say to a mother who has lost her child.

Utterly hideous. How anyone can say something like that is beyond me.

elisenbrunnen · 26/04/2018 09:20

The Pope, the President of Poland, the Germans and the Italians not showing the UK in a very good light is it. - I agree. The UK is not shown in a good light - we have mobs, and riots, and stupid people all demonstrating outside a Children's Hospital for a child who is brain-dead; Meanwhile they are hindering, intimidating and abusing staff from caring for other sick children, who may actually have a chance at a decent life.

They don't look good at all!

Angry
MarvelleGazelle · 26/04/2018 09:21

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MissEliza · 26/04/2018 09:26

Can I just do a fact check? Was it not the hospital that wanted life support withdrawn and the parents were against it?

DoryNow · 26/04/2018 09:26

How can you "resuscitate" while there is still life?

We only have one side of the story, please remember that folks.
"Something must be done" - Something is being done, it's called EOL care and sometimes in these cases supportive inaction is the best action, why do we always expect activity,?

He is slowly drifting away, let that happen without tubes and invasive machinery which are actually not helping but are merely there to placate the parents.

fenneltea · 26/04/2018 09:27

Fresh tart, there is no way anyone could call you a murderer! You were the most loving mother a child could ask for.

We have become immune to facing death and loss in this society, and it always seems wrong to lose a child before their time; but sometimes it just happens, we can't control everything and we have to accept that.

I often find that those brought up with animals and livestock have a much more pragmatic view on life and death, because they see it on a regular basis, there is a saying that if you've got livestock then you've got deadstock, and that is true, sometimes you can find an apparently healthy animal just gone.

With humans we expect everything to have a name and a cure, and sadly that isn't the case. Alfie has had the best care and investigations for a long time, it's unfair to prolong things when he can't be helped.

We live in a strange world when there is such an outcry over a child that has received the best of care, and yet children under five will die awful deaths today every five minutes simply due to a lack of clean water. I feel the pope would be better placed to putting the effort into remedying that than he has with his campaign of false hope.

Bluelady · 26/04/2018 09:27

Fresh, that's terrible. I'm so very sorry people are condemning you for doing the right thing for your child. 💐

When did we start to put quantity above quality of life? It feels perverse to me that any parent would want to preserve the husk of their child at any cost. I dread to think what Alfie's last days will be like if he's allowed to leave AH. The whole thing is heartbreaking.

user1457017537 · 26/04/2018 09:30

Elisen no pictures of rioting and abuse people are keeping a quiet respectful vigil for Alfie. I have already been called a GF. Check out the live feeds from Alder Hey and then come back

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