Anyone following the Ashya King story - link to his brothers latest youtube post

hatrickpatrick

laserlad2010 wrote: »

If they had taken him after he had been discharged, fine. Their decision. But to take a child from a hospital bed? No nursing or medical care? Negligent.

In the UK, it seems that hospitals and/or local government can confine people to hospital far too easily. Also, you're operating under the assumption that the people treating him are 100% correct. I can tell you from bitter experience that this is often not the case.

Yes these parent have their childrens' best interests at heart, but children die from cancer, not all can be saved, and sometimes the best decision is to allow a child to die with dignity and not full of tubes in a foreign hospital.

Not a chance. It's better to fight for any scrap of possibility than to give up. Not just in this situation, but in any situation. Your attitude is precisely why they took him from the hospital - they feared that the hospital had adopted the same stance and was preparing to give up. They were taking him somewhere they could continue fighting to the bitter end.

If giving up is ok in someone's book then that's absolutely fine, but there's no reason that should be forced on people who don't believe in it.

_Whimsical_

I found the media portrayal of this case very annoying tonight. Headlines on a couple of news channels were formulated for a misquote from the father. The headline led with "Father accuses doctors of trying to kill Ashya".Then they showed video of the man being harassed by journalists along the street and asked why he had taken Ashya away. He responded by saying "if we left him there they'd have let him die, they'd have let him turn into a vegetable" which is worlds away from him accussing them of actively trying to kill the child.

Then a dr was interviewed in response to the "accusation" and seemed to choking with emotion saying they were terribly upset at the idea they'd try to kill a child when they've spent their lives trying to save them. He finished up saying it was a measure of the families severe stress.

It seemed like the media was on the cusp of changing the story again, this time casting the parents as lunatics afraid that people were trying to kill their child. The whole lot of it is so unjust. I really hope these people don't have more misery heaped on them by viewer/reader hungry news editors to boot.

laserlad2010

hatrickpatrick wrote: »

In the UK, it seems that hospitals and/or local government can confine people to hospital far too easily. Also, you're operating under the assumption that the people treating him are 100% correct. I can tell you from bitter experience that this is often not the case.



Not a chance. It's better to fight for any scrap of possibility than to give up. Not just in this situation, but in any situation. Your attitude is precisely why they took him from the hospital - they feared that the hospital had adopted the same stance and was preparing to give up. They were taking him somewhere they could continue fighting to the bitter end.

If giving up is ok in someone's book then that's absolutely fine, but there's no reason that should be forced on people who don't believe in it.

First, do no harm. That is a basic principle of medicine, even more important in paediatrics. Any further treatment in this case was deemed to cause more harm than good - therefore it was not recommended.

"fighting to the bitter end", as you put it, is great for Rocky movies. Our role is to advocate for the child. Not pander to parents wishes. If it is not appropriate for the child to be put through experimental, unvalidated treatment then you can bet that the medical team would advocate STRONGLY against it.

I can state emphatically that any treatment decisions made by the treating team were in line with internationally accepted, peer-reviewed guidelines and protocols in oncology. This is because every single child with cancer in UK/Ireland is in a study, database or registry. Research in this field is painstakingly slow, so that we never reduce survival rates for any child. Usually it involves adding chemotherapeutic agents to an already-validated regimen to try to improve the numbers.

If you ask most experts in the field of Paediatric Oncology, they will tell you that protom beam therapy is hocus pocus, a sham, b****x... take your pick.

If you want to criticise the manhunt, fine. Or the police, fine. The reality is that the treating team in this case acted wholly appropriately and indeed as any other specialist oncology department would in the US, UK or Europe.

hatrickpatrick

laserlad2010 wrote: »

First, do no harm. That is a basic principle of medicine, even more important in paediatrics. Any further treatment in this case was deemed to cause more harm than good - therefore it was not recommended.

If someone is 100% guaranteed to die soon without treatment, the idea that attempting to save them could do more harm than good is bizarre.

"fighting to the bitter end", as you put it, is great for Rocky movies. Our role is to advocate for the child. Not pander to parents wishes. If it is not appropriate for the child to be put through experimental, unvalidated treatment then you can bet that the medical team would advocate STRONGLY against it.

Surely better than no treatment at all, or treatment which is 100% guaranteed not to work?

I can state emphatically that any treatment decisions made by the treating team were in line with internationally accepted, peer-reviewed guidelines and protocols in oncology. This is because every single child with cancer in UK/Ireland is in a study, database or registry. Research in this field is painstakingly slow, so that we never reduce survival rates for any child. Usually it involves adding chemotherapeutic agents to an already-validated regimen to try to improve the numbers.

Let me give you an analogy here, although it relates to a far less serious situation of course: I've had a problem with persistent gynecomastia since I finished puberty. Conventional medical advice suggests that nothing apart from surgery has any hope of curing it, and yet the bodybuilding community has discovered a drug based treatment option which has a massive possibility of working and which currently seems to be working for me. Yet it's still considered "off label".

This isn't to suggest that any random treatment will work, but that sometimes, off label / unapproved treatment can - can - be better than the approved or recommended "official" treatment. Surgery would have left me with permanent numbness and scarring. Anti-estrogen medication is doing neither of these things.

If you ask most experts in the field of Paediatric Oncology, they will tell you that protom beam therapy is hocus pocus, a sham, b****x... take your pick.

If you take my example above, you don't want to know how many doctors I went through who told me that any conservative treatment for gyno was hocus pocus and a sham before I found one who was willing to at least give it a try.

If you want to criticise the manhunt, fine. Or the police, fine. The reality is that the treating team in this case acted wholly appropriately and indeed as any other specialist oncology department would in the US, UK or Europe.

The bottom line is this: Correct me if I'm wrong, but as it's been explained to me, conventional treatment had already been pretty much guaranteed not to work for this kid. So it was a choice between proton beam therapy or acceptance of inevitable mortality.

If it was a choice between two treatments, one of which had a known chance of working and one of which was unknown, then I'd agree that it was the better option (although I still wouldn't believe in the state / hospital / whoever being able to take custody ahead of the individual / individual's legal guardians), but as I understand it, this kid is going to die with or without proton beam therapy, so how can anyone argue that it's not at least a possibility that should be exhausted in the absence of any "official" alternative?

laserlad2010

hatrickpatrick wrote: »

If someone is 100% guaranteed to die soon without treatment, the idea that attempting to save them could do more harm than good is bizarre.



Surely better than no treatment at all, or treatment which is 100% guaranteed not to work?



Let me give you an analogy here, although it relates to a far less serious situation of course: I've had a problem with persistent gynecomastia since I finished puberty. Conventional medical advice suggests that nothing apart from surgery has any hope of curing it, and yet the bodybuilding community has discovered a drug based treatment option which has a massive possibility of working and which currently seems to be working for me. Yet it's still considered "off label".

This isn't to suggest that any random treatment will work, but that sometimes, off label / unapproved treatment can - can - be better than the approved or recommended "official" treatment. Surgery would have left me with permanent numbness and scarring. Anti-estrogen medication is doing neither of these things.



If you take my example above, you don't want to know how many doctors I went through who told me that any conservative treatment for gyno was hocus pocus and a sham before I found one who was willing to at least give it a try.



The bottom line is this: Correct me if I'm wrong, but as it's been explained to me, conventional treatment had already been pretty much guaranteed not to work for this kid. So it was a choice between proton beam therapy or acceptance of inevitable mortality.

If it was a choice between two treatments, one of which had a known chance of working and one of which was unknown, then I'd agree that it was the better option (although I still wouldn't believe in the state / hospital / whoever being able to take custody ahead of the individual / individual's legal guardians), but as I understand it, this kid is going to die with or without proton beam therapy, so how can anyone argue that it's not at least a possibility that should be exhausted in the absence of any "official" alternative?

Has anyone even bothered to research what proton beam therapy is?!?!

Its RADIOTHERAPY LIGHT. The basic premise is that in normal radiotherapy you fry normal brain, then the tumour, then normal brain again as the beams pass through.

Proton beam therapy aims to save the normal brain AFTER the tumour because the "scatter" of radiation is less. There are 2 proton centres being built in the UK EVEN THOUGH we don't know whether proton beams are as effective as conventional radiation at killing tumour cells.

HSE and NHS regularly send kids for these treatments in an attempt to preserve normal brain.

"Great!" you say... "Ashya needs this"... WRONG.

Ashya needs Craniospinal radiation because of the tumour he has. In other words, his entire brain and spinal cord need to be exposed to radiation. Essentially, we are relying on conventional radiation to "scatter" and hit all of his brain.

Proton beam therapy will not hit all of his brain, and the treatment is much more likely to fail.

Probably the worst thing to come out of this story, after the fact that the child has been used by various parties to advance their own goals, is that the general poorly-informed public's opinion of doctors has sunk lower despite a refusal to consider all the facts.

JP Liz V1

http://www.rte.ie/news/2015/0323/689088-ashya-king-recovery/


Good to hear

Paramite Pie

Fantastic news.

Hopefully the demonization of the parents can be laid to rest.

Wacker The Attacker

Brimful of asha on the 45

K.Flyer

Not to dampen their good news, but 5 years without any signs of tumour cells is the standard time frame to consider cancer free, -and unfortunately that is still no guarantee of the disease returning.

The very best wishes for them though, as we are going through the exact same dilemma of decision making at the moment ourselves.

FueledbyCoffee

Best of luck K

JP Liz V1

K.Flyer wrote: »

Not to dampen their good news, but 5 years without any signs of tumour cells is the standard time frame to consider cancer free, -and unfortunately that is still no guarantee of the disease returning.

The very best wishes for them though, as we are going through the exact same dilemma of decision making at the moment ourselves.

Good Luck K.Flyer

K.Flyer

Decisions have been made...
It's just gone 6.30 am and I am having a coffee in Dublin Airport, it's all a bit surreal.
After a couple of months of long deliberations we are now on our way to Essen in Germany for the preliminary planning for our son to have proton beam therapy. We will be there for a few days, then back in June for 6 - 8 weeks for the treatment.
The decision was one we wished we never would have had to make, but we had to weigh up all the risks and hopefully this gives him his best chances.

silverfeather

K.Flyer wrote: »

Decisions have been made...
It's just gone 6.30 am and I am having a coffee in Dublin Airport, it's all a bit surreal.
After a couple of months of long deliberations we are now on our way to Essen in Germany for the preliminary planning for our son to have proton beam therapy. We will be there for a few days, then back in June for 6 - 8 weeks for the treatment.
The decision was one we wished we never would have had to make, but we had to weigh up all the risks and hopefully this gives him his best chances.

I wish you all the luck in the world. xx

Sending you and your family my best wishes, K xxx

seventeen sheep

Fantastic news for Ashya and his family.

K.Flyer wrote: »

Decisions have been made...
It's just gone 6.30 am and I am having a coffee in Dublin Airport, it's all a bit surreal.
After a couple of months of long deliberations we are now on our way to Essen in Germany for the preliminary planning for our son to have proton beam therapy. We will be there for a few days, then back in June for 6 - 8 weeks for the treatment.
The decision was one we wished we never would have had to make, but we had to weigh up all the risks and hopefully this gives him his best chances.

Best of luck to you. It's a decision that no parent should ever have to make. I really hope, with all my heart, that it goes well.

K.Flyer

Thanks for the kind words guys. It's something I wouldn't wish on my worse enemy.
The weekend went well and nuero assessment was encouraging, so now we are trying to get everything ready for the long stay.
It's the big step now, so fingers crossed.

Hi K,

Just sat here thinking of your littlun, I hope things are well with you all

K.Flyer

Hi All,
So his treatment started in Germany yesterday after a slight hitch on Monday, they had found a small new growth which was missed by the hospital in Dublin and they had to alter the plan and tell us about it.
So "only" six more weeks to go, all being well.
Thanks again for your kind words..
k.f.