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January 6, 2013 / Living Life Our Way

Saving Neon Roberts- The Importance of asking questions

This post is not an expression of my opinion on the article below, of this case in general or of any other. Indeed it is a terrible situation for anyone to be in and the decisions we arrive at are our own to make. This *is* however, about highlighting the importance of asking questions and seeking out *all* of our options, not just those initially presented to us, so we can be empowered to make INFORMED decisions. We frequently have far more choices in all aspects of our lives than people are led to believe and more options than (it would seem at least) some organisations and the government would like us to even know exist. This is something we need to be mindful of; to question everything, seek knowledge for ourselves and to draw our own conclusions, rather than rely on others to provide us with unbiased, objective information. Because in reality this is not what we receive unless we search it out for ourselves, we rarely get given the complete picture, yet it is what we need to make the right decision for our individual situation.

The importance of asking questions and seeking our own truth goes for so many aspects of parenting; pregnancy and labour choices, vaccines, medical and health care, the way we choose to parent generally and how to educate to name just a few examples. For me, it is not about everyone arriving at the same conclusion or about doing something a particular way. There are no ‘shoulds’ and no definitive right or wrongs (with obvious exceptions that go without saying). There is only a good decision for that individual child, at that time and in that situation. It is therefore important people know and fully understand *all* of their choices, seek the information required about each option *then* make an informed decision, based on *their* unique situation. (It goes without saying that any personal choices made do also consider any implication on others or society in general, if the decision could be likely to significantly affect others. Of course balancing this out is part of the decision making).

Returning to the quoted article below, it does also remind us not to make incorrect assumptions about another person’s decisions. Especially without even taking the time to consider their rationale or understand *why* they have acted, or refused to, in a certain way. Ultimately you may or may not draw the same conclusions about any given subject (and why would you expect to necessarily? No two situations are exactly the same anyway) but it does allow for understanding and acceptance of other people’s choices and differences. For example this parent is far from irresponsible, as some assumed, she simply feels there are other options. It is not our place to judge whether we agree or not with her decision, but understanding her reasons is the difference between dismissing her as irresponsible and opening our eyes to the possibility that there *are* other (possibly better?) solutions. True understanding of another person’s actions or choices does not come from making assumptions, it only comes from asking questions, seeking knowledge and searching for answers. Just because someone has taken a different path doesn’t mean that they are wrong or that they think you are either.

Saving Neon Roberts

What has been lost in the press reportage of Sally Robert’s brave struggle to obtain a better clinical deal for her son Neon is the actual documented severity of the long term effects of radiation to the brain. These include; personality changes, memory loss, problems with brain functions, deafness, necrosis (shrivelling) of the brain tissue, stunted growth and causing the growth of secondary cancers. The side effects intensify if chemotherapy is added to radiotherapy as is proposed for Neon.

Neon had a scan last week and there is no indication of any tumour re growth, however radio therapy is due to begin on Jan 10th. According to Sally’s lawyer with the new evidence in her possession since her research began, she has very strong case for an appeal. Whatever the outcome of the appeal there remain ways to protect Neon from the harsh after effects of radiation . Moreover Sally wants to use her experience and the abundant amount of information she now has to help other families who are in her situation.

It is surely surprising that despite the great wealth of the pharmaceutical industry and the huge amounts raised by the public for cancer research the treatments offered in the UK, surgery, radio therapy and chemotherapy, have not changed since the nineteen forties.

Why for example isn’t hyperthermia a well evidenced approach to cancer treatment including brain tumours, which is used by the prestigious Barnes Jewish Hospital in Washington as a state of the art treatment approach, also offered here? The principal of hyperthermia is that cancer cells are much more sensitive to and intolerant of the effects of excessive heat than normal cells, also tumours have an impaired ability to adapt their blood circulation to the effects of high temperatures thus hyperthermia can cause the reduction of blood flow to the tumour. Hyperthermia also activates the immune system while causing no harm to healthy cells. Hyperthermia is used in Germany both as a single treatment and as conjunctive treatment to both radio and chemotherapy since it enhances their effects while reducing side effects.

Interestingly Doctor Clare Vernon consultant clinical oncologist at the Hammersmith hospital has been quoted in the Lancet (2001) as saying “I think every major cancer treatment centre should have a hyperthermia unit. Hyperthermia is very effective even when other treatments have failed. It is also very cheap and well tolerated.” The American Cancer Society describes it as” a promising way to improve cancer treatment.”

Another advanced cancer treatment available in America is provided at the Burzynski institute. Burzynski has developed a bio-chemical defence system which activates genes in cancer cells reprogramming them to self destruct. The high success rate that Burzynski was able to demonstrate over 20-30 years finally prompted the FDA to run a study which confirms that the approach works and has no side effects. Previously it has been standard practise of the FDA to provide drug licences only for big established pharmaceutical companies which had ruled out Burzynski’s institute.

In 2007 a small pharmaceutical company connected to the university of Alberta, Canada found a simple cure for cancer but major pharmaceutical companies were not interested in taking it on board. A Canadian scientist tested the drug on human cancer cells and found it killed lung, breast and brain cancer cells and left the healthy cells alone.
Pharmaceutical companies are not investing in this research because the method cannot be patented and without a patent they cannot make money. Research on the drug has shown support for its effectiveness and that it has no adverse side effects.
Dr Leonard Lichtenfield from the American cancer society wrote of the last study that the drug appeared to be worth pursuing. The drug is called dichloroacetate (DCA).

There is also Proton Beam Therapy a more sophisticated form of radio therapy which is one of the most precise and advanced treatments of cancer available. Unlike conventional radio therapy it is known to be non invasive and painless and causing minimal damage to surrounding tissue. I have found that the UK NHS will fund patients’ treatment, travel and accommodation to units around the world providing Proton Beam therapy. I am amazed Sally was not told this by Neon’s doctors and it is not now being offered to Neon on the NHS.

All the time there have been 2 major difficulties that Sally has had to contend with in her search to find a better, more humane treatment for her son’s condition. The first, is the 1939 Cancer act which makes it illegal in the UK to promote or advertise anything other than radio, chemo or surgery as treatments for Cancer. The second is that although adults can choose different treatment protocols, children have no choice but surgery, chemo and radio therapy (described by one parent of a child with a brain tumour as “cut ,burn and poison”), therefore clinical studies looking at other approaches are largely limited to adults rather than children.

Here now lies a paradoxical situation. If Sally wants to take Neon for a cancer treatment that doesn’t include radiotherapy or chemotherapy she is told there are no studies on children by which it can be evaluated and therefore it must be ruled out. Case histories indicating positive outcomes in children worldwide who got through the net, and successful studies with adults don’t help. The NHS consider this as insufficient argument to support a parent’s choice of one of these therapies.

It has gradually become clear to Sally that she has been caught in a web of procedures rather than true unimpeded scientific evaluation of the potential benefits of these approaches for her son. She feels she is fighting bureaucrats when she should ideally be working alongside scientists to evaluate the best choice of protocol to provide the best long term outcome for Neon.

Above and beyond all this I can see how incredibly difficult it must be for any parent in her situation to argue their child’s case without fear that their child will be taken away from them. This has in fact happened to Sally and her greatest challenge now is to recover custody of Neon. She have been widely represented in the press as being an irresponsible parent. The truth is, that as we can see from the last brain scan that Neon was never in any immediate danger requiring her be panicked into agreeing to a treatment that is painful to receive, the immediate side effects involve; a burnt scalp, inflammation of the lining of the mouth, difficulties chewing, speaking and swallowing as well as mouth and throat infections, damage to the salivary glands and loss of hair, with long term repercussions, potentially making it impossible for him ever to lead a normal life as well as making him more likely to suffer further cancers in other organs, strokes and heart attack. The choice is clearly not one that any parent wants to be rushed into. However the 1939 Cancer Act ensures that most parents tragically are led to believe there is no choice.

The more Sally read what was going on in other countries and the more she received information through her solicitor from professionals working in the field of cancer, of the spread of proven options available, the more she became aware that Neon’s life could be preserved and his future secured. From the options available there is one that does not depend upon the repeal of the cancer act for its implementation, there is also the possibility of conjunctive approaches to reduce the effects of radio and chemo and increase Neon’s immune responsiveness.

If Sally wins her case for Neon this will not be a waste of public money, rather in saving her child she will have opened a door to let in the light bringing new hope to all sufferers of childhood cancers and their families

Linda Scotson

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