Found Alive UK - Ashya King, 5, Southampton, 28 Aug 2015

[Aeronomy]

Didn't see this posted anywhere, Ashya was first diagnosed 40 days ago on July 22.

 

[Supernovae]

At the Children's Hospital in my area (CHOC-Orange), the pediatric oncology department encourages parents of patients to research and tell them what they discover. They understand that it's a fight for life and that information varies and changes everyday.

I feel sorry for these people. However, I note that the studies voted above show this therapy is for removing tumors. Isn't his gone already?

From my limited medical knowledge, chemotherapy and radiotherapy (of which proton beam therapy is a subset) are adjuvant therapies: they're given after the surgery to mop up any remaining cancer cells that are invisible to the naked eye, reducing the risk of recurrence.

 

[Supernovae]

The treatment the parents say they want is available in Switzerland, Munich, and Madrid. So I don't understand what they are doing in Marbella. They'd have had to drive past Madrid to get down to Marbella, coming from France.

I also don't see how a tumor that's already been surgically removed can be treated. But if a clinic has agreed to treat their child, why aren't they there? And if the parents haven't arranged the treatment in advance, why on earth did they take such a sick little boy out of hospital before they had?

Something seems to be missing from the story the father's told, I think.

The red flags for me were his complaining about the fact that previous treatment had been "trial and error," that he wanted something with "positive results" (on one level this is very understandable) and that Ashya would be "fine" once he got the proton beam. The reality for cancer, particularly for advanced ones, is that sometimes the treatment works and sometimes it doesn't, and for the newest treatment protocols there may be relatively few antecedents. From what I can work out proton beam therapy seems to have some advantages over conventional radiotherapy in terms of minimising long term damage to the brain, based on a small number of studies, so long as the tumour is localised (from Aeronomy's post #77), if there's any spread you need to blast it with whatever you've got. Mr King seems to think it's a magic bullet, and the mass of non-medically trained social media users seem to be jumping on the bandwagon that it's the one true magic bullet that will "save Ashya" based on his say so.

It may be that the oncologists were trying to tell him the unpleasant and complicated reality, and on the other hand we have a foreign clinic with a slick promotional website (this type of commercial operation, for these types of disease and treatments, is basically unheard of in the UK), with lots of success stories (but none of the failures), and he's willing to sell the house for it:

http://www.proton-cancer-treatment.com/

 

[Little Jedi]

But even so how is the parents decision to try anything to save Ashya 'illegal'?

 

[Xina_Marie]

I am so dense sometimes. This whole 24 hours before feeding tube stops was not the hospital saying it was going to withdraw the tube from him in 24 hours and that is why the family took him, but the hospital saying that because the family took him, he would have only 24 hours before the battery would die. This whole battery thing is so ridiculous. You put a power cord on it and recharge it like a cell phone.

Someone mentioned feeding tubes through the nose. Yes, that is an NG tube. If it goes through the mouth, it is an OG tube. The hospital my daughter was released from made us have a permanent tube placement before we could take her home, but I have heard of other hospitals allowing this to happen and with training, a parent can do it themselves without a medical professional supervising. You grease it up with some KY and you slide it in.

My knee jerk reaction is to say the hospital is on some kind of power trip. I had the head of pulmonology come in at my request and consult on my daughter's case and he told me she needed to be fitted for a coffin and she would not survive long. Say what? Up until that time I was told by her neonatologist that her condition would resolve itself. The neo basically told me that guy was nuts and we ignored him. He had very basic facts of her case wrong and didn't know what the hell he was talking about. I made sure to bad mouth him all over the hospital to anyone who would listen. He did not hold his position long. We had follow up visits and I would pass him in the hallway and my whole body would shake and I would break down into tears. I seriously wanted to injure that turd. And BTW she is 5 now and her lung condition did clear up on its own.

We also had an ophthalmologist (THE specialist in the whole state for her eye condition) who told us our daughter is cortically blind. We went through the mill on that one with my husband becoming very depressed over it and refusing to help me teach her sign language since there was no point since she couldn't see our gestures. I refused to believe it and sought out other specialists. She even received services for blind children until someone noticed when she came into the testing room that she walked over to a clear cellophane candy wrapper and picked it up off the floor and handed it to the test giver. Turns out she had a lazy eye and a crossed eye. Pretty far cry from blind. I also wanted to throttle that particular doctor for putting us through years of heartache.

I guess I have had two very specific examples of doctors who are the TOP of their field tell me things that were so WRONG and if I was not a questioning authority type, it could have led us down to many, many wrong paths and treatments for our child. I have not seen the dad's video, but my reaction to this is, if the kid is not going to survive under the NHS protocol, why not let the dad spend his hard earned money trying to save his son. Sometimes, in the end all that matters when you have a kid with complicated issues is knowing that you did everything in your power that you could to save them. I would do anything to make sure my daughter has the best medical treatment, therapies, education, etc. that we can afford for her.

Anyway, my two cents for whatever it is worth.

 

[Supernovae]

Proton therapy is coming to the UK, but what does it mean for patients?

http://scienceblog.cancerresearchuk...to-the-uk-but-what-does-it-mean-for-patients/

 

[ZaZara]

But even so how is the parents decision to try anything to save Ashya 'illegal'?

It might be considered illegal if they planned to treat him with methods that are not suitable for his cancer, but there is absolutely nothing to indicate that this is the matter.
There was a case in the UK last year (if I remember well), where the mother refused to let the child have chemotherapy and abducted him.

But that is not the case here. These parents want the best for their child and the hospital is on a powertrip.
A lot of what they claimed turns out to be not true at all. What I found especially nasty is the fact that the faith of the parents was mentioned - and then discounted, so why mention it at all?

Social Services in th UK have a terrible reputation for snatching children from their parents.

According to The Guardian and other sources:
http://www.theguardian.com/society/2014/aug/31/ashya-king-found-spain-parents-arrested

Legal experts said it was unlikely that the Kings had committed an offence by taking Ashya out of hospital. Professor Penney Lewis, of King's College London, said: "There has never been a case where parents have done something like this and they have been prosecuted."

The parents are being held under an international arrest warrant on suspicion of neglect.
IMHO this cannot be proven and I hope that Spain will refuse to extradite the family to the UK.

 

[Sarahlou]

I get the feeling there is something we are not being told here. I can't quite put my finger on it but it's all a bit strange.

 

[bessie]

Dense, Xina??

I doubt anyone will object if I go OT to acknowledge what an awesome mom you are! We're fortunate to have so many exceptionally loving parents on WS, many of whom face tough challenges with courage and aplomb. Today, your account touched me in a special way. God bless you.

 

[Supernovae]

The father says that he was "more or less" told that they could get an emergency protection order if he questioned care. That "more or less" is probably operative. I'd be very surprised if an emergency protection order would be in the pipeline simply for "questioning" and rather than actively interfering with treatment, and suspect the oncologists would give a very different account of that conversation. But either way the father goes away with that impression, stops saying anything to the doctors but continues to brood on it by himself until they decide to up and leave the country, with Ashya having been operated on recently and before he was discharged from hospital full time (never a good idea), without telling anyone where they were going or why, in the immediate sense. Hence the police become involved and launch an international manhunt.

I think the neglect EAW is just a legal nicety so that they can hold them, on the grounds that they don't have the ability to provide the correct nursing care for him, and from the authorities perspective, they had no idea where he was, what care he was receiving, or what condition he was in. Now they've got Ashya back in a hospital, I doubt charges will be leveled.

 

[Little Jedi]

I am so dense sometimes. This whole 24 hours before feeding tube stops was not the hospital saying it was going to withdraw the tube from him in 24 hours and that is why the family took him, but the hospital saying that because the family took him, he would have only 24 hours before the battery would die. This whole battery thing is so ridiculous. You put a power cord on it and recharge it like a cell phone.

Someone mentioned feeding tubes through the nose. Yes, that is an NG tube. If it goes through the mouth, it is an OG tube. The hospital my daughter was released from made us have a permanent tube placement before we could take her home, but I have heard of other hospitals allowing this to happen and with training, a parent can do it themselves without a medical professional supervising. You grease it up with some KY and you slide it in.

My knee jerk reaction is to say the hospital is on some kind of power trip. I had the head of pulmonology come in at my request and consult on my daughter's case and he told me she needed to be fitted for a coffin and she would not survive long. Say what? Up until that time I was told by her neonatologist that her condition would resolve itself. The neo basically told me that guy was nuts and we ignored him. He had very basic facts of her case wrong and didn't know what the hell he was talking about. I made sure to bad mouth him all over the hospital to anyone who would listen. He did not hold his position long. We had follow up visits and I would pass him in the hallway and my whole body would shake and I would break down into tears. I seriously wanted to injure that turd. And BTW she is 5 now and her lung condition did clear up on its own.

We also had an ophthalmologist (THE specialist in the whole state for her eye condition) who told us our daughter is cortically blind. We went through the mill on that one with my husband becoming very depressed over it and refusing to help me teach her sign language since there was no point since she couldn't see our gestures. I refused to believe it and sought out other specialists. She even received services for blind children until someone noticed when she came into the testing room that she walked over to a clear cellophane candy wrapper and picked it up off the floor and handed it to the test giver. Turns out she had a lazy eye and a crossed eye. Pretty far cry from blind. I also wanted to throttle that particular doctor for putting us through years of heartache.

I guess I have had two very specific examples of doctors who are the TOP of their field tell me things that were so WRONG and if I was not a questioning authority type, it could have led us down to many, many wrong paths and treatments for our child. I have not seen the dad's video, but my reaction to this is, if the kid is not going to survive under the NHS protocol, why not let the dad spend his hard earned money trying to save his son. Sometimes, in the end all that matters when you have a kid with complicated issues is knowing that you did everything in your power that you could to save them. I would do anything to make sure my daughter has the best medical treatment, therapies, education, etc. that we can afford for her.

Anyway, my two cents for whatever it is worth.

BBM ~ OMG !!
That's terrible.
I'm so glad that your little girl's doing well now.

I also would like to say a special 'Thank You' for your explanation (re. the 'tube') at the beginning of this thread !

ETA ~ What Bessie said goes for me too !

 

[Little Jedi]

I get the feeling there is something we are not being told here. I can't quite put my finger on it but it's all a bit strange.

Honestly, I thought exactly the same but I really can't find anything here other than a desperate family trying whatever they can to save their child.

 

[Little Jedi]

I kinda get the feeling the police are 'sympathetic' to the Kings.

They have just followed official procedures from getting the 'report' from the hospital.

I don't think they are at fault in any way they're just doing their job.

"Hampshire Police said medical advice was that Ashya was in "grave danger".


"Mr King said the couple had "pleaded" with Southampton General Hospital for Ashya to receive the treatment, but were told it would have "no benefit whatsoever".

"The charity Cancer Research UK says proton beam treatment is only available on the NHS in the UK for eye conditions."

http://m.bbc.co.uk/news/uk-england-29003431

 

[Little Jedi]

http://scienceblog.cancerresearchuk...to-the-uk-but-what-does-it-mean-for-patients/

Thank You !
Interesting read altogether.

But a couple of relevant points:

"At the moment, patients needing this type of radiotherapy are sent for treatment in the US, but the government has now pledged £250 million to build two new NHS proton beam centres."

Who could benefit?

Doctors think that around one per cent of patients treated radiotherapy in the UK could be suitable for proton therapy.
This would mostly be children with various types of cancer including brain tumours".....


"The other alternative – mostly for adults and children with brain tumours – is to head abroad for proton therapy."

NOTE ~ This is from Cancer Research UK

 

[Supernovae]

Statement from University Hospital Southampton NHS Foundation Trust:

Our priority has always been Ashya's welfare and we are delighted that he has been found. We are now working closely with colleagues in Malaga to ensure he receives the essential medical support he needs.

We are aware of the comments made online by his father. Throughout Ashya's admission we have had conversations about the treatment options available to him and we had offered the family access to a second opinion, as well as assistance with organising treatment abroad.

We understand how distressing this situation is for everyone involved, particularly Ashya's family. We will continue to do what we can to support them and assist the police in providing any information they require.

– UNIVERSITY HOSPITAL SOUTHAMPTON SPOKESMAN

http://www.itv.com/news/update/2014-08-31/hospital-offered-boys-family-help-with-foreign-treatment/

NHS England:

We all want what is best for Ashya, and it is for the cancer doctors and oncologists involved to advise on what is the best treatment for each child.

Where doctors recommend it, the NHS does fund proton beam therapy, including supporting 99 children last year to travel abroad for treatment.

– NHS ENGLAND SPOKESWOMAN

http://www.itv.com/news/update/2014-08-31/nhs-england-wants-what-is-best-for-ashya-king/

The Police:

http://www.itv.com/news/update/2014-08-31/police-no-apology-for-being-proactive-to-find-ashya/

 

[Supernovae]

Video statement from ACC Chris Shead:

http://www.bbc.co.uk/news/uk-england-29003431

 

[Little Jedi]

Statement from University Hospital Southampton NHS Foundation Trust:

We are aware of the comments made online by his father.
Throughout Ashya's admission we have had conversations about the treatment options available to him and we had offered the family access to a second opinion, as well as assistance with organising treatment abroad.

– UNIVERSITY HOSPITAL SOUTHAMPTON SPOKESMAN

http://www.itv.com/news/update/2014-08-31/hospital-offered-boys-family-help-with-foreign-treatment/

They're not saying what the context of these conversations ?

Brett Kings statement ~

"We pleaded with them for proton beam treatment. They looked at me straight in the face and said with his cancer - which is called medulloblastoma - it would have no benefit whatsoever.

'I went straight back to my room and looked it up and the American sites and French sites and Switzerland sites where they have proton beam said the opposite, it would be very beneficial for him.

'Then I spoke to them again, I wrote a letter which he never responded to, saying OK - *I will sell my property in order to pay for the proton beam*.'

* This is what's really bothering me - it's not as if they were wanting or expecting anyone else (NHS) to pay

They were told he was going to die !

http://www.dailymail.co.uk/news/art...lains-parents-snatched-hospital-went-run.html

 

[ZaZara]

Journalist David Waddell writes about Ashya:

http://waddell.wordpress.com/2014/08/31/the-day-i-took-my-son-without-consent/

Ashya King (5) has been found with his parents in southern Spain. He’s safe, but unwell, with a brain tumour that was previously treated at Southampton General Hospital. His parents took him out of hospital on Thursday, apparently against medical advice.

He was not taken ‘without consent’ as was claimed by Hampshire Constabulary and widely reported by mainstream print and broadcast media. Without a court order, hospitals have no legal authority to give or deny consent to parents or legal guardians taking a child away.


BBM

The parents were allowed to take their child from the hospital, yet it seems that the extradition procedure has started. :-(

IMHO it was a brilliant move to post the video with their own story.
Whatever the press says about these people, they can speak with their own voice.
I doubt very much that the British secret courts will stand a chance with this family.
Hopefully, the Spanish judge will decline the request for extradition since there is no probable cause.

NB. Strictly speaking, the UK has no official secret courts.
However, in the case of for instance minors and the alledged desire to protect them, the courts have draconic powers.
They can rule to withhold the name of the child, they can stop parents from seeking publicity or speaking to journalists, they can forbid journalists to publish the story, they can forbid any form of contact between parents and children. In the UK, a mother was jailed because she waved to her child when they happened to meet in the street.
A British court could decide anything about Ashya King and the public would not be informed about it at all.

 

[Little Jedi]

Hmmmm .....

(from ZaZara's link ^^)

"My understanding is that Ashya was not formally discharged from hospital by his parents. They would not have signed forms to absolve the hospital of further responsibility for his care.
So the hospital authorities were in an awkward limbo where their paperwork suggested they remained responsible for Ashya’s care, but did not have him in on their premises.

Given this scenario (or similar), they called on the police to get him back. "

 

[SwampMama]

Journalist David Waddell writes about Ashya:

http://waddell.wordpress.com/2014/08/31/the-day-i-took-my-son-without-consent/

Ashya King (5) has been found with his parents in southern Spain. He’s safe, but unwell, with a brain tumour that was previously treated at Southampton General Hospital. His parents took him out of hospital on Thursday, apparently against medical advice.

He was not taken ‘without consent’ as was claimed by Hampshire Constabulary and widely reported by mainstream print and broadcast media. Without a court order, hospitals have no legal authority to give or deny consent to parents or legal guardians taking a child away.


BBM

The parents were allowed to take their child from the hospital, yet it seems that the extradition procedure has started. :-(

IMHO it was a brilliant move to post the video with their own story.
Whatever the press says about these people, they can speak with their own voice.
I doubt very much that the British secret courts will stand a chance with this family.
Hopefully, the Spanish judge will decline the request for extradition since there is no probable cause.

NB. Strictly speaking, the UK has no official secret courts.
However, in the case of for instance minors and the alledged desire to protect them, the courts have draconic powers.
They can rule to withhold the name of the child, they can stop parents from seeking publicity or speaking to journalists, they can forbid journalists to publish the story, they can forbid any form of contact between parents and children. In the UK, a mother was jailed because she waved to her child when they happened to meet in the street.
A British court could decide anything about Ashya King and the public would not be informed about it at all.

But luckily now, thanks to the family, they have gotten worldwide attention (in part thanks to the hospital/doctor/LE wayyyyy over reaching on this story ) and putting out a worldwide manhunt for a child with cancer. Imagine that, not a terrorist or a threat to anyone, a child with cancer and the parents who are desperate to save him. Their dramatic, dire description of the feeding tube was quickly dis-bunked by many parents and medical professionals and we were all reading the story going "wtf? There HAS to be more to this." And as parents, many of us instantly were able to put ourselves in these parents shoes.

So i guess the British courts can impose the aforementioned sanctions and forbid the British press to comment on the story but the cat is already out of the British bag (so to speak). They cannot shut down the worldwide media, the internet and everyday people and blogs from demanding answers, passing on updates and showing support.

I will definitely be paying attention to this story. For now I am solidly behind the parents and appalled that the child has been removed from their care. That child needs his parents. The greatest source of comfort to a child is their parents. i am horrified that they have taken that source of comfort from that baby. If his child is in such a dire condition, with such a limited life expectancy then those parents need to have every single minute possible with that child, those siblings need to be their too.