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

[Supernovae]

Boy. In a quick google search, I found that MD Anderson in Houston recommends Proton Beam therapy for children over traditional radiation.

That's pretty much all I need to see, to know this family is at least on the right track. Prayers that the world will listen to his plea and help this poor family.

The question is in which cases. Obviously we all have a degree from the University of Google, not any kind of recognised medical school but MD Anderson's site says:

Is Proton Therapy Right for You?

Proton therapy benefits patients whose tumors are solid with defined borders, meaning the cancer has not spread to other parts of the body. The noninvasive treatment does not require surgery to remove the cancer, making it ideal for inoperable tumors.

http://www.mdanderson.org/patient-a...rapy-center/what-is-proton-therapy/index.html

Wikipedia on Medulloblastoma:

All PNET tumors of the brain are invasive and rapidly growing tumors that, unlike most brain tumors, spread through the cerebrospinal fluid (CSF) and frequently metastasize to different locations in the brain and spine.

http://en.wikipedia.org/wiki/Medulloblastoma

The article says (rather tentatively) further down:

There is some evidence that Proton beam irradiation provides some benefits in terms of reducing the impact of radiation on the cochlear and cardiovascular areas and that it reduced the cognitive late effects of cranial irradiation.

 

[micki68]

I'm not sure it's the police fault - I would more quickly blame his original doctors who want to play God and don't allow any questioning of their decisions.

I think sometimes doctors just think they know better, doesn't mean they are right. I am waiting to hear more information to come out.

 

[perfectingpink]

Here is a reputable source for anyone wanting to do further research.

http://search.nih.gov/search?utf8=✓&affiliate=nih&query=Medulloblastoma+proton+therapy

 

[Lacyanna]

All of this really brings to the surface the fact that we are really in a whole new world in terms of being our own advocates for our health. We have never, in history, had the ability to obtain studies, information and views from other medical authorities, as well as forums full of individuals who have experience

The days of our grandparents are gone. No longer do we automatically accept with the physicians tell us as gospel. Some may feel they should not question, but we now have choices.

Ashya's father is making a choice. He has the the right to do that. What we are seeing more and more is basically a crossroads situation. A patient or a patient's parent/guardian may not agree with the "protocol" and wants to learn more. I have personally experienced a few different situations when I questioned my surgeon and doctors. They didn't like it. I was actually taken aback to see them act quite threatened. However, it was not good enough for me to simply hear "Well, you don't need to worry about what you've read, or studies, that's my job." This amounts to "Don't worry your pretty little head". That's simply not good enough.

I don't know the entire story yet, but I am absolutely sure we are looking at a man who loves his child and doesn't feel he was heard or respected. He didn't ask us for money. He asked that he gets the space and time to sell his own property, so that he can save Ashya.

May he succeed.

 

[gitana1]

THANK YOU!!!

I'm not finished with the entire video, but wanted to stop for a second and thank you for posting it. I support this family 100%. It's obvious the father did not act on any whims and is quite knowledgeable of what he's doing. Parents of children with cancer are often more up-to-date on current studies, etc. of their child's particular cancer than the oncologists themselves.

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?

 

[perfectingpink]

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?

I will try to do more research tomorrow.

 

[necco]

I suspected this was the NHS being overzealous. The video above confirms it for me. There was no court order. They simply wanted to get their child a second opinion. That should be a right. I applaud this family's decision. The NHS (in my opinion) manipulated the public and LE by saying he was in grave danger because his feeding tube would stop. The automatic one would. Doesn't mean you can't just fill the kid up manually. I think the hospital owes this family an apology.

(And my apologies for assuming initially they were taking him out AMA for end of life care, but I would have applauded that as well.)

And if you think stuff like this doesn't happen here in the US, google Justina Pelletier.

 

[Hejlena]

I watched the video, and while I can't take a side on the medical issue, what I can say is this family clearly loves his baby very much and wants to do what's best for him.

The take-away for me is this: he does not say he took the child because Dr.s were doing certain things or not doing the things he researched. That would be different. He says he took the child because the Drs threatened to get a protective order if he questioned those procedures, and that that would potentially leave Ashya without the support of his parents in his darkest hour.

Right or wrong, intent wins out here for me.

 

[Amster]

We've heard one side of the story so far. There is another side. Shouldn't that be heard before the doctors are vilified?

 

[micki68]

We've heard one side of the story so far. There is another side. Shouldn't that be heard before the doctors are vilified?

I don't think any doctor meant any harm to this child, it was just a case of differing opinions. Unfortunately I don't think some physicians understand that parents now have access to information previously unavailable via the internet. I also understand any parent wanting to save their child.

 

[Little Jedi]

:maddening: Parents Arrested ??

"We don't have many details on Ashya's condition at this point in time, but what we do know is he was showing no visible signs of distress," Mr Shead said.

Concerns for his health had grown because he is fed through a complex unit and its batteries, designed only for temporary use and not easily replaced, might have run out.

Police had said it was unclear whether Ashya's parents had spare batteries.

"not easily, might have, unclear" ??

What charges have they been arrested on ?
Child Neglect is clearly not gonna cut it .


Also from the article - the parents are being questioned (?) at a police station - Ashya has been taken to a hospital in Malaga ???

This is seriously f***ed-up !

http://m.bbc.co.uk/news/uk-29001388

 

[Aeronomy]

:maddening: Parents Arrested ??

"We don't have many details on Ashya's condition at this point in time, but what we do know is he was showing no visible signs of distress," Mr Shead said.

Concerns for his health had grown because he is fed through a complex unit and its batteries, designed only for temporary use and not easily replaced, might have run out.

Police had said it was unclear whether Ashya's parents had spare batteries.

"not easily, might have, unclear" ??

What charges have they been arrested on ?
Child Neglect is clearly not gonna cut it .


Also from the article - the parents are being questioned (?) at a police station - Ashya has been taken to a hospital in Malaga ???

This is seriously f***ed-up !

http://m.bbc.co.uk/news/uk-29001388

Yes, they were arrested.

Assistant Chief Constable Chris Shead confirmed they were arrested and taken to the police station. I think the arrest may have had to do with the warrant that was already out for them. It is so sad.

 

[Little Jedi]

The couple, who were being held under an international arrest warrant on suspicion of neglect

:banghead:

http://www.theguardian.com/society/2014/aug/31/ashya-king-found-spain-parents-arrested

 

[Little Jedi]

Mr King said they took him to seek a cancer treatment not available on the NHS.

 

[zwiebel]

We've heard one side of the story so far. There is another side. Shouldn't that be heard before the doctors are vilified?

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.

 

[zwiebel]

Mr King said they took him to seek a cancer treatment not available on the NHS.

It is, but candidates are sent to the US - or maybe Munich now. It costs the NHS about £100k for US treatments, I think, so I'm sure only candidates doctors believe will really benefit are considered. Last year it was announced the UK was funding two treatment clinics, but I don't think they're open yet.

 

[Aeronomy]

Just wanted to add proton-beam therapy is already being utilized as part of standard treatments for many children with Medulloblastoma. Photon, x-ray treatment (what we generally call radiation) is also still being utilized. Both are radiation treatments with the x-ray radiation being shown as causing greater damage to children's brains (studies have shown a decline averaging 3 IQ points PER YEAR following treatment). There are very few proton-beam centers worldwide and only one in the UK (though I believe 2 more are in construction).

The biggest difference in the two --

X-ray beam radiation - hit the intended target (the cancer cells) and then the beam continues to move throughout the body and damages other areas...(this is most damaging in brain tumors and with even greater damage when it's a brain tumor in a child).

Proton beam radiation - hit the intended target and stop

**In cancers that have spread, x-ray is often the chosen treatment for radiation.

**In cancers that have not spread, proton-beam is a preferred treatment. (Although it may be preferred, it is not used as often due to the limited availability or access for patients.

 

[Little Jedi]

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.

:seeya: I'm really not sure !

This article seems to answer some of those questions,

* ITV News has secured a picture of the family's property in Marbella.

Didn't someone (early in thread) quote about him saying he was selling property to pay for treatment ?

*Brett says that the family went abroad to seek a procedure called "proton beam treatment" in Czechoslovakia.

"We decided to try and sort it out ourselves, but now we're refugees almost. We can't do anything. The police now are after us. The things we wanted to do to raise the money to pay for the proton beam [treatment], they have prevented it now ... Call off this ridiculous chase. We are not neglecting our son. He is in perfectly good health ... We just want to be left in peace."

– Brett, Ashya's father

* The youngster, who was being treated for a brain tumour


http://www.itv.com/news/story/2014-08-30/police-five-year-old-ashya-king-found-alive-in-spain/

 

[Aeronomy]

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.

BBM -
Proton-beam therapy attacks generally in the same ways as x-ray radiation. Both would be used to attack any possible remaining cancer cells.

What bothers me the most is that from what I understand the doctors did not feel the proton-beam therapy would help. This suggests to me the doctors may not believe Ashya will live very many years. I'd like to think they would suggest it if he had a good chance for long term survival. I really would like to know why they would discourage the treatment if in fact they did discourage it, if survival wasn't the reason.

 

[perfectingpink]

There are multiple public FB pages for Ashya and his family. From what I looked at, they are in support of the family. Rather than link all of the pages, I figured it is easier to link the search.

https://www.facebook.com/search/more...77852556771334

From what I have read, this one is the "official" page:

https://www.facebook.com/groups/1462059947403801/