We're Ashya Kings parents right?

by The Rebel 38 Replies latest jw friends

  • The Rebel
    The Rebel

    Do you remember the case?

    Jehovers Witness Parents did a runner without telling the medical staff caring for their seriously ill child and took him to receive proton therapy in Praque as this treatment was not available in the U.K.

    First most importantly the good news, the boy was declared cancer free last March.

    Anyway i am sure at the time this issue would have created a lot of heated debate on the forum, as it was a case that created a media frenzy, with the parents and their Jehovers Witness religious beliefs being heavily critizised . However as I followed the case I couldn't help but admire the parents, as I felt they would have acted indepentedly of both the Jehovers Witness organisation and the U.K medical advice, having in my opinion seriously thought the matter through, and then doing they thought was the best way for treatment.

    So if you remember the case my questions are:-

    [) do you think Ashya Kings parents were right?

    2) Could you have done what Ashley Kings parents did in a similar situation.

    The Rebel.




  • slimboyfat
    slimboyfat

    Heavily qualified by the fact that I don't know what really happened, the media are lousy, and everyone involved in relating the story has an agenda... it looks like the parents were right. There was a better treatment, they fought for it, their child got it, he's better off now. While they may appear a bit wacky it's hard to fault them.

    At the time I seem to remember the treatment they wanted was being denigrated by UK doctors and media as experimental and unproven. Now it's being hailed on the BBC as revolutionary and the way forward.

  • cofty
    cofty

    No.

    Aysha cannot be declared cancer-free for another 5 years. He had no detectable cancer since his surgery in the UK.

    the treatment they wanted was being denigrated by UK doctors

    Not true. The NHS was/is spending millions buying Proton Beam equipment.

    The debate was regarding adjunctive treatment post-surgery. This is to try to kill any cancer cells that cannot be detected and reduce the risk of recurrence. The doctor's position was that Proton Beam was good for pre-surgical treatment to target the tumour accurately with minimum damage to surrounding tissue, but not for adjunctive therapy where you are delivering radiation to the area around where the tumour was.

    Their advice was that even if they had a machine in the next room it was not the tool they would choose.

    Aysha has still not received post-op chemo. Stats show that this has reduced his chance of staying free of cancer from 70% to around 50%

    The documentary in the UK that presented the case from the perspective of the NHS showed a very different side to the issue. Aysha's parents refused to engage in conversations with the consultants regarding treatment and then twist that into a story about arrogant doctors.

    Aysha is alive because of the extreme skill and dedication of NHS surgeons, oncologists and radiotherapists.


    Source...

    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%.”

  • Mr Negative
    Mr Negative
    They were most definitely not right. They were reckless and put Ashya's life in danger. They held the NHS to ransom to get the treatment they wanted, and in the process, put Ashya's life at risk. Ashya already had a good chance of recovery as long as he was treated soon. The parents delayed this treatment in their attempts to force the NHS into paying for a more expensive treatment which had no guaranteed benefits over and above the treatment he would have gotten in the UK anyway. The NHS only allowed them to have the alternative treatment in the end to prevent the parents from delaying any treatment any longer. As well as the fact that the negative media coverage sort of forced their hand. But the fact that the alternative treatment worked is not evidence that the original treatment would not have worked just as well. The parents unnecessarily delayed treatment because they, with little medical knowledge, believed they knew better (I'm sure a hang-up from their know-it-all JW indoctrination), and the NHS had to come to the rescue, costing them more than was necessary....at OUR expense.
  • slimboyfat
    slimboyfat
    From what I recall the NHS recommended a therapy which involved a significant risk of brain damage. I think many patients may choose a treatment with lower survival rates if it avoided brain damage. At least the dilemma and choices should be faced openly and collaboratively, not statistically and paternalistically. Statistics only count the things that are measured. This tends to focus on mortality and morbidity rates sometimes to the exclusion of quality of life. Both sets of considerations are important and the opinions of patients and families matter.
  • Mr Negative
    Mr Negative
    If you're worried about quality of life, you don't drag a sick child halfway round Europe, delaying vital and necessary treatment, just to try to prove you know better. That reminds me of a certain JW teaching (that all of the world is suffering just to prove that God knows better), and it is certainly not the right thing to do.
  • The Rebel
    The Rebel

    Cofty and Mr Ngative, medically you raise valid points, but I can also empathise with the pain the parents were going through, and I can appreciate they were confronted with complex emotional human feelings and were desperate. All this was going on with the added extra stress of press and media attention. Personally I never doubted the parents humanity, and it was obvious they cared deeply for the child. I am not saying that makes it right, but I am sympathetic.

    Anyway I raised the O.P because a recent study published in the Lanet Oncology journal states that proton beam therapy causes fewer side-effects in child patients than conventional radiotheraphy, and has similar survival rates. So assuming that is the case and such medical care was not available in the U.K, I felt it vindicated them.

    Cofty, Mr Negative when time permits tonight I will read your in depth posts and evaluate the points you kindly raised.

    The Rebel

    P.s Added to say just read your post Slim, thanks for your feedback.

  • cofty
    cofty
    proton beam therapy causes fewer side-effects in child patients than conventional radiotheraphy, and has similar survival rates

    The issue was post-op adjunctive therapy. Not reducing a tumour which is what Proton Beam therapy is good at

    many patients may choose a treatment with lower survival rates if it avoided brain damage - SBF

    So why refuse chemo? It does not cause brain damage and reusing it has reduced Aysha's chances from 70/80% to 50%

  • slimboyfat
    slimboyfat

    Why did they refuse chemotherapy? Was it all or nothing at the time? From what I remember the concern was mostly about the long term effect of radiotherapy causing brain damage and further cancers.

  • The Rebel
    The Rebel

    I have not yet had time to evaluate Coftys, Mr Negative and Slims replys, (I will do this tonight ) However in my origional O.P I asked this question :-

    COULD you have done what Ashley's parents did in a similar situation?

    Please note I didn't ask the question " WOULD" you have done what Ashley's parents did in a similar situation. Instead I asked the question " COULD " you have done what Ashley's parents did in a similar situation?

    I would be interested to " Coftys" " Mr Negative" and " Slims " reply on the question " COULD" not " WOULD" you have done what Ashley's parents did?

    The Rebel.

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