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

[Little Jedi]

^^ That's so great just to see his little smile.^^

He looks really well !

ASHYA KING PARENTS STILL FEAR UK AUTHORITIES

The five-year-old's father told Sky: "At the moment we don't feel 100% safe, I suppose you would call it, contemplating being in England until perhaps they do this investigation into how everything was conducted for us.

"Once that has been established then we can think about going back to England."

I can't say I blame them one bit.

Spain is probably better for Ashya at least for now, winter's coming ........... :cold:

 

[Little Jedi]

Another thing......... :giggle:

I think by Naveed still doing videos for us shows that they are aware that so many DO care & are letting us SEE how Ashya is doing.

Which has to be of some small comfort for the family right now !

That idiot comment ^^ about *they're crazy for LETTING Naveed loose on social media*

If it wasn't for him we wouldn't have a clue what was really going on ...... & Ashya surely wouldn't even be in Prague

I think he deserves a ton of credit !! :clap:

Ok ~ Rant over
(well for today at least :lol: )

 

[ZaZara]

ASHYA KING RETURNS TO SPAIN FOR FURTHER TREATMENT SUNDAY

The Telegraph reports:
http://www.telegraph.co.uk/news/wor...-to-return-to-Spain-after-proton-therapy.html



Cancer victim Ashya King is due to fly back to Spain on Suday to continue his progress under the guidance of one of Spain’s leading oncologists.
Argentinian-born doctor Hernán Cortés-Funes will determine the next round of treatment with his family after the five-year-old finished proton therapy in the Prague Tumour Clinic for his brain tumour.

He is head of oncology at a Madrid hospital as well as the High Care International Hospital in Marbella, near the Kings’ Costa del Sol flat.

Ashya’s property developer dad Brett, 51, and his wife Naghmeh, 45, are expected to take their son home before deciding when and if he needs to be admitted to hospital. Dr Cortés-Funes is understood to favour giving Ashya a chemotherapy drug called Lomustine, which is in capsule form and can be taken at home.

BBM


According to ABC-España, Ashya will check in in the Marbella High Care Hospital on Monday
http://www.abc.es/sociedad/20141024/abci-ashya-tratara-espana-201410241307.html


Translation:


The King family has decided to continue with the treatments that their young son needs in the South of Spain, in the Marbella High Care Hospital that is directed by the oncologist Cortes Funes. This specialist, one of the most respected in our country, traveled to Prague last week to get acquainted with his new patient and the details of his case.

It is anticipated that this weekend the King family will fly to Malaga in order to enter the hospital in Marbella on Monday.

Yesterday the Czech hospital bid farewell to the little one with a party. During the celebration, father Brett King recalled how they fled from the British hospital where their son was admitted and he was glad of his decision. "We should ask ourselves to what extent we are aware of the treatments available in order to have the assurance that our children will receive the best. I had to investigate whether there were other options, I made ​​my decision and I'm happy now »


BBM


:dance: :dance:

 

[Ellmau]

Are the NHS going to fund this part, I wonder?

 

[Little Jedi]

I think it was just the treatment itself :dunno:

 

[ZaZara]

ASHYA KING'S FAMILY TO SELL HOME TO FUND LEGAL BILLS

The Mirror reports:
http://www.mirror.co.uk/news/uk-news/brain-cancer-boy-ashya-kings-4551884

The family of brain cancer boy Ashya King face losing the home where they are currently caring for him.
His parents say they have no option but to sell their Spanish holiday apartment to pay the huge legal bills associated with the battle to get their five-year-old son the “best possible” treatment.

They have also been hit by expensive living costs while Ashya received six weeks of pioneering proton beam therapy in the Czech Republic.
In addition there is also the cost of a private jet that was needed to transport him there from Spain.
Ashya’s parents Brett, 51, and Naghmeh, 45, had initially believed all their expenses would be covered after British charity Kids ’n’ Cancer pledged to give them up to £100,000.

(...)

Brett said of the charity: “Whatever their reason for withholding the money, I’m sure it’s a reason that in their minds is the right one so I don’t really want to push them for the help if they say they’re going to help other children.”


BBM

The way this story twists and turns.... the Kids'nCancer Charity raised a lot of money by claiming that they would pay for the cost of accomodation and that "It is our wish that they come back from wherever they go they are not in debt, and can return to their normal life."
IMHO Kids'nCancer have deceived a lot of people who made donations!

As for the legal costs, how come the persons who falsely accused them still have their jobs, their income and how come they did not have to pay a cent in legal costs themselves?
They still manage to make life hell for the King family!

Life ain't fair and it sucks.


:bombshell:

 

[Little Jedi]

ASHYA KING'S FAMILY TO SELL HOME TO FUND LEGAL BILLS

IMHO Kids'nCancer have deceived a lot of people who made donations!

As for the legal costs, how come the persons who falsely accused them still have their jobs, their income and how come they did not have to pay a cent in legal costs themselves?
They still manage to make life hell for the King family!

Life ain't fair and it sucks.

:bombshell:

:clap: :clap:

 

[ZaZara]

ASHYA KING PROGRESS' VIDEO: PHYSIOTHERAPY AND SPEECH THERAPY


Naveed King has posted a new video. Ashya is making progress!

[video=youtu;4jHykIGTkIw]http://youtu.be/4jHykIGTkIw[/video]

 

[Little Jedi]

Naveed King has posted a new video. Ashya is making progress!

I think Naveed needs to be snapped-up by a decent TV Documentary Production Co.! :hero:

 

[Supernovae]

The latest:

http://www.bbc.co.uk/news/uk-england-hampshire-29944626

He's apparently "in remission," which is good. However...

"The Motol Hospital, where Ashya had been staying, confirmed no chemotherapy had been given.

But a leading cancer expert said, without chemotherapy, the survival rate for children with medulloblastoma - the type of tumour Ashya had - could be significantly reduced from 80% to about 50%.

Prof Roger Taylor, vice president of clinical oncology for the Royal College of Radiologists, said chemotherapy in conjunction with radiotherapy was the "standard course of treatment - without exception" for children with that type of brain tumour.

He said: "For the last 15 years or more we have been using chemotherapy routinely for all children. It's been known for several decades that medulloblastoma responds well to chemotherapy.""

BBM.

I wonder whether lifting the wardship when he arrived in Prague will turn out to have been a mistake. Buried in the Daily Mail series of interviews was the fact that the chemotherapy was also a bone of contention, rather than just the form of radiotherapy, which would make sense since they didn't have to take him without warning from the hospital to Spain in order to sell a property, rather than arranging for him to be transported to Prague for PBT, directly. The only way that their actions made sense was if they were seeking to avoid something imminent, like his first round of chemotherapy (the DM article pretty much confirms this), or alternatively they didn't have the ability to raise the money in full and on the timescale needed to be allowed to substitute PBT for conventional radiotherapy (still a possibility given their, apparent, present financial woes, although how that squares with the costs plan they had to submit to the court, I do not know). Perhaps not coincidental, is the fact that one of the side effects of chemotherapy and, to a lesser extent, conventional radiotherapy, is to deplete blood counts, requiring transfusion of blood products. Now, they say that they were perfectly willing for him to have blood products if he had to (perhaps that latter part is operative) but I remain unconvinced.

 

[Supernovae]

Just to clarify, the fact that he may or may not be in remission isn't directly relevant to whether or not he needs chemotherapy. The chemotherapy and radiotherapy (whether with protons or photons) are to wipe out microscopic traces of cancer cells that could be seeds for the cancer to return or spread.

This is also why it's regrettable that some of the press coverage is at least implying that the improvement in his current condition is because of the PBT. There is no reason why PBT should improve current clinical condition when the main tumour has already been completely removed by surgery, much less should bombarding his brain and spine with protons cure posterior fossa syndrome, it's time and rehabilitation with, speech, occupational and physiotherapies that does that:

http://www.ncbi.nlm.nih.gov/pubmed/9378600

"Transient mutism is a well-recognized sequela of posterior fossa tumor resection in children. A recent review from our institution indicated that 12 of 142 children undergoing such procedures (8.5%) exhibited transient speech impairment, the largest series of such patients reported to date. Each child had a vermian neoplasm that was approached by division of the inferior vermis (n = 10) and/or superior vermis (n = 3). Seven children had medulloblastomas, three had astrocytomas, and two had ependymomas. None of the affected children had cerebellar hemispheric lesions; in contrast, the incidence among children with vermian neoplasms was 13%. In general, mutism developed 1 to 4 days postoperatively and typically was associated with puzzling neurobehavioral abnormalities. All children had bizarre personality changes, emotional lability, and/or decreased initiation of voluntary movements; nine exhibited poor oral intake; and five had urinary retention. Detailed neuropsychological testing was performed in seven children and confirmed the presence of widespread impairments not only in speech, but also in initiation of other motor activities. These deficits generally resolved during a period of several weeks to months, although two children had residual impairment. Characteristically, affect and oral intake normalized before the speech began to improve. These deficits were noted to correlate with the presence of edema within the brachium pontis bilaterally, although this association was not absolute. The latter observation suggests that there was not a single locus underlying this disorder, but rather that the involved neural pathways may have been impaired at any one of a number of sites within the posterior fossa. Based on the results in our patients and in others described in the literature, we postulate an important role for the cerebellum and/or its afferent and efferent connections in initiating (rather than merely coordinating) speech and other complex motor activities and a potential role for these structures in influencing overall behavior and affective state."

BBM.

 

[Supernovae]

Are the NHS going to fund this part, I wonder?

Spain is an EU member state so in theory they should be entitled to reciprocal funding on the same basis, although I don't know whether the fact that, IIRC, Naghemeh and some of the children were born in Spain/ Spanish citizens effects this.

 

[ZaZara]

The latest:

http://www.bbc.co.uk/news/uk-england-hampshire-29944626

He's apparently "in remission," which is good. However...



BBM.

I wonder whether lifting the wardship when he arrived in Prague will turn out to have been a mistake. Buried in the Daily Mail series of interviews was the fact that the chemotherapy was also a bone of contention, rather than just the form of radiotherapy, which would make sense since they didn't have to take him without warning from the hospital to Spain in order to sell a property, rather than arranging for him to be transported to Prague for PBT, directly. The only way that their actions made sense was if they were seeking to avoid something imminent, like his first round of chemotherapy (the DM article pretty much confirms this), or alternatively they didn't have the ability to raise the money in full and on the timescale needed to be allowed to substitute PBT for conventional radiotherapy (still a possibility given their, apparent, present financial woes, although how that squares with the costs plan they had to submit to the court, I do not know). Perhaps not coincidental, is the fact that one of the side effects of chemotherapy and, to a lesser extent, conventional radiotherapy, is to deplete blood counts, requiring transfusion of blood products. Now, they say that they were perfectly willing for him to have blood products if he had to (perhaps that latter part is operative) but I remain unconvinced.

IMHO this all depends how one quotes the article.

Ashya King has been treated by the experts of the Motol Clinic in Prague, and his current docter is Dr. Cortes Funes, who is one of Spain's top experts in the field.
Nowhere it is mentioned that the decision not to give chemotherapy goes against the advice of the Motol Clinic.
http://www.bbc.com/news/uk-england-hampshire-29944626

"Speaking after Ashya finished a course of proton beam therapy at a special clinic in Prague, his father, Brett King, said he did not need a separate course of chemotherapy.
He said: "We came to a conclusion [with] the doctors that, really, he doesn't need it... "

According to Dr Cortes Funes:
"Dr Cortes Funes, who is caring for Ashya in Spain, told the BBC the boy was doing well and the medical team was waiting to decide what treatment to give him next.
He said one option may be a course of immunotherapy, which uses antibodies and stem cells to boost the body's defence against cancer."

 

[Supernovae]

http://zpravy.idnes.cz/ashya-king-p...-fx2-/domaci.aspx?c=A141024_112823_domaci_mlb

From Google translate, apologies for the dodgy translation:

https://translate.google.com/transl...=A141024_112823_domaci_mlb&edit-text=&act=url

Hospital wanted to administer chemotherapy, the family was against

In Motol boy underwent intensive rehabilitation. Doctors also throughout checked to tolerate anesthesia necessary for irradiation. Initially he served as tube feedings. The original plan was to receive at the hospital also antineoplastic agents, which are drugs for chemotherapy. While the irradiation target the affected place of the tumor, chemotherapy hits the entire body and can thus destroying any metastases.

Motol but not put chemotherapy, because her parents refused. Doctors, though they were of a different opinion, their wishes respected. "Optimal chemotherapy is administered. What may have its failure to influence the health status, but would in conjunction with this particular patient clearly does not like to say, "said iDNES.cz Wroclaw Šmelhaus, Head of Pediatric Oncology Hospital. Supplementing radiation chemotherapy is common practice, according to him. He did not however comment on why her doctor at her family's wishes not agree.

"The doctors have concluded that chemotherapy is something Ashy needs. His tumor is very precisely located. Doctors performed two lumbar puncture and found that the tumor has not metastasized, "said iDNES.cz the affair boy's father Brett King. It was, according to him clear whether chemotherapy boys really help, and outweighed concerns about side effects.

Parents some time ago said that they want to undergo chemotherapy son in Spain, where the family owns property. According to him, on Monday examined the boy doctors from Malaga. Spanish oncologist Hernán Cortés up a child in Prague visited discussing with parents how chemotherapy as carefully done. "We have designed a drug with lower toxicity, which is served until after irradiation. But doctors must still consider what treatment will be suitable for him. It will determine when, after the examination, "he added Ashyův father.

 

[Ellmau]

There's an update in the Mail, not really any new info, but the parents talking melodramatically about how they're scared to return to the UK because the NHS and Social Services haven't promised they'll never intervene again. I do wonder if the real reason isn't this additional chemo question and whether that might spark off a similar incident. Especially as it looks as if refusing the chemo means they're in breach of the court order for Ashya's treatment.

From a couple of weeks ago, a group of leading cancer doctors are concerned that this case may encourage other parents to

reject NHS advice and demand treatment abroad which could reduce children’s chances of survival.

Doctors are worried that a potentially problematic precedent has been set, because the NHS eventually agreed to pay for Ashya’s treatment after the family went on to Prague where Ashya received proton therapy.

They say other parents are already asking for proton therapy, which is not yet available in the UK. They warn that, in the case of a cancer like Ashya’s, timing is crucial and to travel abroad for treatment involves delays that could affect the outcome.

There are serious concerns in the medical community over Ashya’s case. Delays were caused by the flight to Spain, where the Kings have a property they had planned to sell to raise funds, and court proceedings in the UK to decide what treatment the boy should have. In the treatment of Ashya’s cancer, called medulloblastoma, radiotherapy should take place between four and six weeks after surgery – but Ashya’s did not start until more than seven weeks had passed. More importantly, the doctors say, Ashya’s chances of survival could be affected because he has not had the full treatment package. His parents have refused chemotherapy for him.

While he was based at the Motol hospital in Prague, travelling daily to the private proton therapy clinic, the Kings signed waivers to exempt their son from the drug infusions that doctors had prescribed and the British court had ordered. Brett King, Ashya’s father, said in a TV interview that he did not believe his son needed chemotherapy.

Roger Taylor, professor of clinical oncology at the College of Medicine, Swansea University, said good outcomes for children with Ashya’s condition were achieved only through the full combination of surgery, radiotherapy and chemotherapy.

“It’s only with that package of treatment that you achieve that 70-80% survival,” he said. “We do know from past experience the approximate outcomes without chemotherapy. In North America, there was a trial of two different doses of radiotherapy without chemotherapy. Survival was in the range of 50-55%.”

It is understood the Kings are interested in immunotherapy for Ashya instead – an experimental approach being attempted by a few scientists which tries to prime the immune system to fight cancer cells, but is generally attempted only in cancer patients who have run out of other options. “It is not used anywhere as a substitute for chemotherapy,” said Taylor.

So he still has a 50/50 chance of survival, which is better than nothing - but not as good as it could be.

Children’s cancer doctors in the UK say the prominence and coverage of the case is causing other parents to question the advice they are given and seek treatment that they think is kinder but may – because of delays – make it more likely the cancer will come back. The survival rate among children whose medulloblastoma recurs is very low.

“They have this idea that there is something special about protons and [their child] can receive it without side-effects,” said one doctor, who worried about the erosion of trust between parents and clinicians. “From our point of view, I think this will mean the next few years of really difficult discussions with families.”

The group of doctors who have written to Stevens fear the decision of the NHS to pick up the bill for proton therapy in Prague will have made many families think the treatment is as good or better than their child can receive in the UK and that it faces opposition because of rationing or cost-cutting.

It is a very difficult case morally, because although I passionately believe anyone should be permitted to refuse treatment if they wish, it's much more problematic to make that decision on behalf of a child too young to offer reasonable consent.

 

[ZaZara]

There's an update in the Mail, not really any new info, but the parents talking melodramatically about how they're scared to return to the UK because the NHS and Social Services haven't promised they'll never intervene again. I do wonder if the real reason isn't this additional chemo question and whether that might spark off a similar incident. Especially as it looks as if refusing the chemo means they're in breach of the court order for Ashya's treatment.

From a couple of weeks ago, a group of leading cancer doctors are concerned that this case may encourage other parents to


So he still has a 50/50 chance of survival, which is better than nothing - but not as good as it could be.


It is a very difficult case morally, because although I passionately believe anyone should be permitted to refuse treatment if they wish, it's much more problematic to make that decision on behalf of a child too young to offer reasonable consent.

Hi Ellmau, I followed this too, and frankly, I did not believe my eyes when I read this.
Apparently, Britain Knows Best and these 'group of leading cancers doctors' do not pay any attention to the fact that Ashya's doctor in Spain is a major expert in the field.

Foreigners are not too be trusted, that's how I understand this. Shocking.

 

[Supernovae]

ZaZara

Who is his doctor in Spain?

 

[ZaZara]

ZaZara

Who is his doctor in Spain?

Dr. Hernán Cortés-Funes

Wikipedia:
http://es.wikipedia.org/wiki/Hernán_Cortés-Funes

Dentro de las áreas de investigación destaca su interés en el desarrollo de nuevos fármacos, estudios clínicos tempranos, farmacología clínica y nuevos tratamientos en cáncer de mama, pulmón, cabeza y cuello y tumores germinales. El doctor Cortés es autor de más de 200 publicaciones en Oncología Médica, colaborador en 14 revistas oncológicas y ha escrito en 7 libros.


Translation:

Within the areas of research is highlighted his interest in the development of new medications, early clinical studies, clinical pharmacology and new treatments in breast cancer, lung, head and neck and germ cell tumors. Dr. Cortés has authored more than 200 publications in medical oncology, is partner in 14 oncology journals and has written 7 books.


BBM

There are other descriptions, for instance on the website of the hospital.

 

[Supernovae]

There's an update in the Mail, not really any new info, but the parents talking melodramatically about how they're scared to return to the UK because the NHS and Social Services haven't promised they'll never intervene again. I do wonder if the real reason isn't this additional chemo question and whether that might spark off a similar incident. Especially as it looks as if refusing the chemo means they're in breach of the court order for Ashya's treatment.

The court never specifically ordered chemotherapy. Rather, it lifted the wardship on the understanding that the Prague doctor approved of a plan including Chemotherapy, which they did. Unfortunately that left them with no recourse when the family later refused:

http://www.judiciary.gov.uk/wp-content/uploads/2014/09/order-ashya-king-05092014.pdf
http://www.judiciary.gov.uk/wp-content/uploads/2014/09/judgment-ashya-king-08092014.pdf

I suspect that the courts were dazed by the publicity and the urgency with which the hearing had to be convened and failed to consider that eventuality.

 

[Supernovae]

I've not had chance to look him up but my immediate thoughts are: that is an awful lot of cancers, with some being mostly or wholly in adults. Is he a specialist in paediatric neurooncology? Apparently not. The second question is do we know what he really thinks about Ashya's treatment and under what circumstances he has recommended/ agreed to this protocol? Brett King said or strongly implied that the Prague doctors were in agreement with his decision to defer chemotherapy, and as the article I linked to above shows, that's not the case.