How to research and advocate for your seriously ill child
Excerpt 2: Complementary and alternative medicine and cancer
Excerpt 1: How to research and advocate for your seriously ill child
This is an edited excerpt from Daniel My Son.
There is no ‘right’ way to act as a child’s advocate or research their cancer. Indeed, parents should not feel guilty about simply leaving decisions to the doctors. Cancers such as Ewing’s sarcoma, Daniel’s cancer, are immensely complicated and the vast majority of cancer parents are not scientists, let alone doctors or oncologists.
Certainly, the landscape is forbidding. Despite the hype one sometimes hears, cancer research moves at glacial speed, with progress measured over decades rather than years. Where cure rates have improved, it is often at least in part due to better and earlier diagnosis. Research into Ewing’s advanced little over Daniel’s five and a half year journey (indeed, for metastatic Ewing’s, there has been no real progress for thirty years). Researchers have learnt more, certainly, but will that knowledge convert into effective treatment? It is unfair to say that researchers and clinicians have simply rearranged the deckchairs on the Titanic, tweaking protocols here and there, testing a few hypotheses with limited success - but not that unfair. It is possible that the new pieces of the jigsaw will eventually enable the full picture to emerge, but that is speculation at present.
This may seem a counsel for despair. However, the role of the engaged cancer parent is not to come up with cures but to help identify the best treatment – anywhere in the world – and then to give treatment the best chance of working by lifestyle adjustment and psychological support.
My approach, in a nutshell, was:
- to find out the full range of options (much fuller than those presented by Daniel’s doctors)
- to canvass opinion as widely as possible
- to learn enough to be able to ask intelligent questions
- to be able to understand the answers, and
- to be able to challenge them where appropriate.
The topics I researched covered efficacy (what works) and side effects. I also tried to evaluate the risk of making things worse, all too real with cancer.
Clearly, my research did not achieve what I wanted because Daniel died. But he did live far longer than expected and I believe that we helped him to tolerate the horrific treatment, and to have as positive an outlook as possible. I am sure that it comforted him that we were seeking answers beyond his doctors. The fact that we ultimately failed does not mean that other parents cannot make a real contribution, especially if their child’s illness is less serious than Daniel’s.
I was an extreme researcher. I wanted to know everything. I trawled the world and read more articles about cancer than was good for me. One way or another, I must have spent thousands upon thousands of hours on Daniel’s illness. But a more modest research effort can also pay dividends; indeed, my efforts would probably have been as effective had I ignored the more outlying stretches of the research tableau.
I truly believe that parents can make a difference, and a number of doctors agreed.
For good or ill, this was my approach, in 23 steps:
Step 1: get the diagnosis as early as possible
It may seem a bit odd to start with this. By the time you know you are a cancer parent, cancer is already diagnosed. This step is for parents who are concerned about their child’s persistent but undiagnosed symptoms.
Early diagnosis is absolutely crucial, because with most cancers the best, perhaps only, chance is when the disease is relatively immature, with fewer genetic changes. Unfortunately, cancer is often diagnosed too late. A large-scale study published in 2012 found that nearly a quarter of UK patients were diagnosed in A&E, when they presented with serious symptoms. The picture is even worse with sarcomas. Just about every case I came across was diagnosed late, with GPs not spotting the symptoms. Usually, it is not their fault: they are not trained to differentiate between common symptoms pointing to relatively benign conditions and those indicating a sarcoma. All doctors are taught to make obvious diagnoses rather than the exotic.
The key message is that, if symptoms, especially pain, are not clearing up as anticipated, you should insist on being seen by a specialist, with appropriate scans. As the adverts say, it is probably nothing, but if it is cancer early action may just save your child’s life, and avoid much suffering.
Step 2: make sure you are at the right hospital and have the right doctors
It is of the first importance that your child is treated at a specialist centre for the particular cancer. Studies show that this makes a real difference. I used to wonder why, because I knew there were standard treatment protocols which every hospital in a country usually uses. The answer is that, with relevant expertise, adjustments can be made to the protocol, the doctor is more likely to know about clinical trials, the other members of the multidisciplinary team (MDT) (for example, surgeons, radiologists and pathologists) will understand the cancer and the nursing and other support staff will know how to deal with side-effects, some of them highly dangerous. Plus the hospital is more likely to have the relevant scanning and other equipment. All this adds up.
It is also so important to feel comfortable with the main doctor – the oncologist. One mother posted this message about their experience:
‘We find a decent person along the way and think they are a hero merely because they behaved decently to us - they held our hand when they gave bad news, or didn't dump bad news on us unexpectedly right in front of our child, or actually responded promptly to a worried phone call instead of having us call over and over again’.
I came across other horror stories, but far more positive stories, it is fair to say. Vitally important though the human side of medicine is, it goes without saying that the key attributes in a doctor are technical knowledge and clinical judgement.
As another mother said: ‘I'd rather have a great surgeon with terrible bedside manners than an okay surgeon with great bedside manners’.
Parents should not assume that they are stuck with the doctor initially allocated. The stakes are just too high. One should be prepared to go to another hospital for part of the treatment if appropriate.
Step 3: make sure the doctors use all the relevant diagnostic techniques
There are two elements to this: first, the techniques used at diagnosis and, second, those used later.
It is very important to get a full and accurate picture at diagnosis. It did not occur to me to ask whether Daniel needed more than the pelvic MRI, bone and chest CT scans he had at the outset. I knew nothing then about those in the Ewing’s community advocating for whole-body PET/CT and MRI scans. Daniel eventually had those scans, but we laboured under the disadvantage of not having baseline scans at diagnosis, making assessment of progress and decision-making more difficult.
A full picture at diagnosis is also needed for staging (grading the seriousness of the cancer), which can sometimes determine treatment choice, for example under a clinical trial.
Scans are the obvious diagnostic technique but there are several lab ones too. I felt that the more we knew about Daniel’s tumour, at diagnosis and relapse, the more informed treatment judgements would be. We had to treat the results with care because they might be poorly understood at that time, but my approach was to collect as much information as possible in case it became relevant as medical understanding improved.
Tests during and following treatment are also extremely important, again both imaging and lab. For example, the RT-PCR bone marrow procedure, though not perfect, can detect cancer at a much earlier stage than traditional techniques, and therefore act as an early-warning system. Other techniques to improve detection of tumour cells circulating in the blood – there may be only a few in a local cell population of billions – are being improved.
There is, however, a balance, as with all things cancer. Some diagnostic techniques carry risks. There are, for example, risks from radiation emitted by CT scans. The fluid used for some scans to aid readability also carries its own risk. A biopsy – taking a sample of the cancer – often involves a general anaesthetic with children. I was acutely conscious, too, of the burden for Daniel of trips abroad for special scans and RT-PCR procedures.
On the other hand, while ignorance of lurking post-treatment cancer may be bliss, it is unlikely to serve one’s child well.
The take-home message is: find out if there are additional diagnostic tests which might help. If the doctor says there is no point using them, ask why (and check with other doctors); if they might help but are not available at the hospital, consider having them done elsewhere, even abroad, if practical.
Step 4: know the statistics but don’t get hung up on them
It is a mantra of some practitioners, driven to counteract doom and gloom oncologists, that patients are not statistics. Statistics are only averages and anyone can buck a trend. I told myself that, if only 2% of Ewing’s patients with lung and bone mets survive for five years, we had to do everything to ensure that Daniel was one of them. Not by pushing anyone else out, of course, but by choosing the correct approaches.
At diagnosis, Daniel could realistically have expected to live for 12 to 18 months at most. Another lad at UCH with a strikingly similar Ewing’s profile survived for only a year; some children live for just a couple of months.
Statistics for rare diseases are often contradictory, largely because data has to be collected over a period of years and from several hospitals or even countries, with the consequent widespread variation in treatment and diagnostic techniques.
But statistics obviously do matter. They give a good indication of the seriousness of someone’s condition, and what is likely to happen. They inform decision-making and, crucially, how much risk to take. I could not do my best for Daniel if shielded from reality.
For all the caveats and their generally depressing nature, statistics could also give flashes of hope, as when studies indicated that Daniel might be in a less unfavourable subset.
Step 5: prepare thoroughly for meetings with the doctors
When Daniel was in remission or part way through a long cycle of treatment and there were no scan results pending, meetings with his oncologist were often routine and required little preparation. Many others, however, required extensive preparation, sometimes running into hours or even days.
Doctors will discuss patients at key stages at MDT meetings, and no doubt on other occasions too. The reality, however, is that often the only time a busy doctor will think about a patient is when the previous patient leaves clinic. If I had questions beyond the routine, I would send them beforehand by email. I wanted the doctor to mull over the issues. Email is a real boon to patients/families. Potentially it is a real burden for doctors, so it should be used judiciously (not sure I always got that right).
With appointments when we were expecting results, I would often prepare two sets of questions, one contingent on a good result and the other on a bad result. But I would try, whenever possible, to get the results beforehand. I could then prepare my questions on the basis of an actual rather than a hypothetical result and, as importantly, could steady myself emotionally.
It was not easy getting results in advance: the UK way is to give results at the next appointment. In other countries, the system is different – patients are often given results the same day, by telephone. That can cause its own difficulties, because the result may not be black and white, but I much preferred pre-meeting notification.
With someone like Daniel who did not want to hear bad news or discuss options or prognosis, it is also important to be clear beforehand whether they are going to attend and, if so, when they will leave, and then stick to that.
Step 6: get everything you need out of meetings
The objective is to get the information one needs. This can be harder than it sounds, because of the emotion and the complexity of the information. For this reason, it is important for another adult to come wherever possible. Two memories and two questioners are better than one.
But the best way to compensate for unreliable memory is to take notes at all meetings (and phone calls). I cannot stress too highly how important this is. I know from the early encounters – when I did not take notes – how apparent understanding at a meeting becomes confusion and amnesia the moment one steps outside.
One Ewing’s patient in the US tape-recorded meetings. I would not necessarily suggest that, because it could make the doctor defensive and monosyllabic, but I understand the rationale.
It is really important to make sure one understands the answers given. Do not be afraid to ask ‘stupid’ questions, disregarding Mark Twain’s advice ‘It is better to remain silent and be thought a fool than to open one's mouth and remove all doubt’. Some doctors are better than explaining things than others. In his book about his son Damon’s heart disease, Doron Weber wrote:
‘I have one rule: if we can’t understand an issue or a medical approach makes no sense to us, it’s the doctor’s problem, not ours. No mumbo-jumbo. We must always know exactly what’s going on so we can help ensure the best decisions are made. The most capable physicians supply the clearest explanations – equally clear about what they don’t know as what they do – and only the mediocre take refuge in obfuscation or omniscience’'
A bit strong, perhaps, but the general sentiment holds true. Persist until you get an answer you understand.
In cricket, teams up against a massive total are said to face scoreboard pressure, inducing mistakes. We were often conscious of waiting-room pressure, where one feels uncomfortable about asking too many questions because of patients waiting their turn. The waiting-room was often heaving. Again, resist such feelings. One should keep questions focused, certainly, and avoid discussion just because an issue is interesting. But the bottom line is that a patient and their family are entitled to the information they need to make decisions. If the doctor is too busy, or is not good at managing their time, there is no reason why patients should suffer.
Step 7: make notes after the meeting
I mentioned earlier the importance of taking notes. I would always type up my notes as soon as possible. Occasionally, if I had forgotten to ask something important, I would email Jeremy. There might well be a ‘to do’ list as a result of the discussion.
Step 8: ask for reports of scans and other results
I felt it really important to get all the reports of Daniel’s scans and other diagnostic tests. Sometimes, the report did not reflect what we had been told. The confusion then needed resolving.
I was able to quote from the reports when writing to other doctors, to give them a better flavour of Daniel’s condition and progress.
Step 9: ask for a copy of the scans
At UCH, we could get a patient’s scans for £20 a go (though I was often given them cheaper). The scans were meaningless to me but I would often send them to other doctors.
Step 10: buy a medical dictionary
I found my Oxford Medical Dictionary so useful, in conjunction with online dictionaries. Cancer, medicine generally, has its own language, usually derived from ancient Greek and sometimes Latin, and understanding suffixes and prefixes helps to demystify.
Step 11: use the internet wisely
The internet is both a wonderful and a frightening thing. It provides a key to information one would not otherwise know existed. But the information can be of drowning proportions, and it can be seriously problematical to differentiate the useful from the useless.
Given the dismal prognosis of metastasised or relapsed Ewing’s, one might suppose that there were few options to explore. In a sense, the opposite was the case, because intractability spawns creativity. When Daniel relapsed, I prepared a table of possible options, including various chemo combinations, stem cell transplants, radiotherapy and allied techniques, biological therapies, surgery techniques, a long list of types of immunotherapy and many other categories.
Each was used or suggested by an Ewing’s doctor somewhere, and then there were countless complementary therapies, too. The table was constantly evolving, and included the contact details of patients trying or looking at an option. Every single one came with complicated and uncertain science.
I nevertheless found the internet an invaluable way of ascertaining the direction of research travel, and who the people to speak to were. I’m sure useful internet research can be done with less time than I was able to devote, but it does need the hard yards (even an email address could take a couple of hours to track down).
Step 12: develop your skills in assessing evidence
This could be a book by itself.
As a lawyer, assessing complicated evidence was not new to me. With both medical and legal evidence, the key imperatives are to test the evidence rigorously, to give it appropriate weight and not to jump too readily to conclusions.
I faced a number of difficulties. First, there is precious little which is certain with rare cancers. To a greater or lesser extent, that is true of all medicine and science. Thomas Kuhn, the 20th century American physicist and philosopher of science, argued that scientific laws are forever provisional – they only hold true until new evidence requires a paradigm shift. There are countless examples of received wisdom proving not so wise, from the Aristotelian paradigm of the sun circumnavigating the Earth onwards.
Epidemiology – the study of patterns in a given population – is particularly inconclusive with environmental and lifestyle factors, which many think are important with cancer. Epidemiology looks for association or correlation but not proof. In the real world outside the lab and clinical trials, there are too many variables for proof. But patterns can still be useful.
Most cancer researchers, in my experience, do not follow the stricture of Karl Popper, regarded by many as the greatest philosopher of science of the 20th century, that researchers should set out to falsify a hypothesis rather than verify it. It sounds counter-intuitive, but Popper maintained that one cannot prove a theory, irrespective of how many examples one may find to support it. Identifying an example which does not fit destroys the hypothesis, or at least requires it to be adjusted. If attempts to falsify fail, the hypothesis is more likely to be correct.
Popper’s approach is now generally accepted by scientists. Many, I am sure, relish picking holes in a hypothesis developed by a rival. And yet most of the articles I read during Daniel’s journey seemed intent on proving a hypothesis. This was particularly so with complementary remedies but it was also common with conventional medicine: many researchers had a pet theory they were keen to promote (of course, a hypothesis has to be erected before it can be dismantled).
There is then the question, which I touched on in the body of the book, of the extent to which one can trust data presented in articles, given the pharmaceutical industry’s inglorious history of suppressing and massaging inconvenient facts. Even when data is presented fully and fairly, to assess whether treatment A is better than treatment B one needs a statistical comparison between the two, and this is often absent.
The result of all this is that so much of what one reads is preliminary, even if not presented as such. That makes assessing evidence a hazardous occupation. I received so much contradictory advice.
So, what to do? My approach was as follows:
- View the evidence as rigorously and objectively as possible, questioning everything and then double- and triple-checking it with independent sources. The more outlandish a claim, the more sceptical one should be
- Work out who to trust, recognising that a layperson will not understand enough about the science for independent judgement. It may take some time to develop this instinct, but there are short-cuts: is the person a specialist in the relevant cancer; how experienced are they; what position do they hold; do they work, or did they train, at a leading institution; what is their publication record (not a failsafe because not every clinician publishes)?
- What patient data is there to support a proposition? I learnt to distrust hypotheses based on preclinical (laboratory) research, however logical the argument might seem. The gap between bench and bed is just too great.
- How rigorous does the data appear? Do the results pass the threshold of statistical significance, and do they justify the conclusions or is there a non sequitur or overclaiming?
- What level of consensus is there amongst experts, albeit that it may only be emerging uncertainly? Canvass as many views worth listening to as possible
- Be aware of confirmation bias: cherry-picking evidence to suit the conclusion one wishes to reach. The risk lurks in all areas of life but it is particularly high when one is looking for solutions for a seriously ill child. It is so tempting to latch onto a hopeful claim because we want it to be true, but it does a grave disservice to one’s child to view evidence through rose-tinted spectacles.
- Be prepared to look beyond clinical trials. At the experimental stage, clinical trials are undoubtedly the best form of evidence – particularly large-scale, randomised, placebo-controlled, double-blind, phase 3 studies (RCTs) (or, better still, systematic reviews – meta-analyses – of multiple RCTs). Clinical experience, once a treatment has been approved, is then, obviously, hugely important. However, the big mistake which many oncologists make, I believe, is to reject therapies which have not been through clinical trials. Remedies which have not been subjected to this level of scrutiny must be viewed with particular caution, but it does not follow that the evidence should be rejected. Sometimes the best is the enemy of the good. The key question is what weight should be attached to particular evidence.
- A doctor’s experience with their pool of patients, though often pejoratively dismissed as ‘anecdotal’, can be valuable
- Understand that treatment does not have to be identical for everyone with a particular condition. There is room for individual adaptation, if that is what the evidence and the doctor’s intuition (itself nurtured by knowledge and experience) suggests.
- With rare, life-threatening illnesses, look for the spark of creativity, but supported by as much hard evidence as possible.
- Try to rank the available options.
Step 13: be prepared to go down blind alleys
At least 95% of my research alleys proved to be cul-de-sacs, though often only after considerable expenditure of effort. In a strange way, it could be a relief when something failed, because it eased the burden of decision-making. Equally, an alley would often divert to somewhere unexpected and promising (the justification traditionally given for ‘blue skies’ research).
Step 14: be willing to look abroad
We were clear from the outset that our search for Daniel would be global.
Cancer services in the UK have improved significantly over the past few years, with increased spending. But the base was relatively low for a leading economy and there is still a lag with some countries. I cannot point to statistics showing a better outcome for Ewing’s in other countries but some types of treatment or diagnostic techniques, available in some European countries, are not available in the UK. Occasionally, the NHS will pay for a patient to have treatment abroad. EU law also entitles patients to NHS-funded treatment in other EU countries if delay is the problem – but, of course, with Brexit that right will shortly be lost.
As importantly, information from abroad can be used to press for treatment in this country. I learnt about radiotherapy to bone metastatic sites from Germany, but Daniel then had the treatment at his hospital. Similarly, I pushed for PET/CT scans at UCH because they were commonplace in some other countries.
Step 15: make use of the different ways of communicating with doctors
There are three ways to communicate with other doctors: by email, by telephone and face-to-face. Email is incredibly useful, and free, and the easiest.
By far the most effective is face-to-face. One can pick up so much from body language and the nuances of spoken language. It is easier to ask supplementary questions and to probe. Doctors may be willing to say something they would not wish to commit to writing. Some showed me scans of other patients to illustrate a point. One builds up a personal relationship, too, which may be useful for the future.
As well as all the meetings in this country, often with complementary practitioners, there were numerous trips abroad, some with Daniel (if he was having a diagnostic procedure), some by myself. Only a couple of the trips proved a waste of time. I appreciate that going abroad is not practical for everyone.
I was amazed how easy it was to pick up the phone and speak to a doctor, especially abroad. If a doctor was not available when I called, they would call back promptly – and sometimes apologise for their earlier unavailability! Although I would ration myself to a limited number of questions, I rarely felt rushed. Every offer of payment was turned down.
Step 16: how to email
I had some self-imposed rules for email communication:
- always be polite (apart from being appropriate, this is far more likely to produce a response)
- understand that the person you are writing to owes you nothing
- give a brief background of your child’s condition, with relevant recent scan or other findings
- show you know what you are talking about – you are more likely to get an useful answer
- ask specific questions, rather than ‘what is the best thing to cure my son?’
- only ask a question or two: doctors want to be able to answer quickly (although some gave detailed expositions)
- do not ask for specific advice: doctors will be aware they do not have the full picture and will not wish to second-guess the treating doctor. They may also be sensitive to a possible negligence claim if something goes wrong. I would say something like: ‘I appreciate you cannot advise in Daniel’s case without much more information. We will discuss matters in detail with his doctors, but in very general terms would you think that, in this sort of case ...?’. That would usually do the trick
- where possible get over some of the human side – many doctors started their reply ‘As a parent myself …’
- immediately express appreciation if they reply, even if the reply is not helpful
- keep supplementary questions to a minimum
- if necessary, send a chaser email, expressed even more politely – ‘I would greatly appreciate a reply, if you have the time’.
- where appropriate, ask for a telephone discussion (and offer to pay).
I would have expected doctors, especially in the litigious USA, to hide behind medico-legal concerns, but this was extremely rare. One American doctor offered to give me Coley’s toxins – which were then in short supply – if I waived legal liability. I would unhesitatingly have agreed - I had no interest in suing anyone for anything. It is to the credit of the medical profession that so many doctors, in so many countries, were so willing to help Daniel.
Step 17: how to get hold of articles for free
I found that emailing authors was an effective way of getting articles for free. There is a move these days towards open access (where full articles are published on the internet), encouraged by major UK research funders. At present, however, one has to pay for most articles; only the abstract (summary) is free, though this in itself can be useful. Typically, articles cost around £30 to buy, which soon mounts up. So, I would ask one of the authors for a copy, explaining my interest. It nearly always worked. Apart from a natural desire to help, doctors were pleased at the interest in their work.
Step 18: do not hesitate to get a second opinion
Doctor: I’m sorry to tell you, Mrs Smith, you only have six months to live
Mrs Smith: Well, I would like a second opinion
Doctor: Ok, you’re ugly as well.
Mrs Smith was right to ask for a second opinion. Patients are often reluctant to do so, because it feels like lack of trust in one’s doctor, on whom one is so reliant. I recognise that feeling. However, Daniel’s life was in the balance and I had to put to one side any fear of causing offence. Doctors always say they have no problem getting a second opinion and the good ones will not mind their judgement being scrutinised. A second opinion helps doctors, too, and oncologists often obtain their own.
One Ewing’s parent blogged:
‘My wife and I did not believe everything any doctor told us, we got four opinions on everything they wanted to do, and then we decided on what we thought was best since the 4 doctors did not even agree. … My son would not be alive today if we had of listened to the first two doctors we seen, they pretty much just wrote him off…’.
I obtained two types of second opinion: informal and formal. I sought informal opinions without reference to Daniel’s doctors. I must have asked for hundreds in all. Informal opinions are not as good as formal opinions, because the doctor will not have the full picture (although scans can be sent). A reply may not be considered. These are important caveats.
However, informal opinions are quick and free and multiple opinions on an issue can help establish where broad consensus lies, and can point to new line of inquiry.
Formal second opinions are usually arranged by the treating doctor, who chooses the independent doctor. The patient’s role is passive. However, I knew from whom I wanted second opinions and found it really useful to visit the doctor.
Although there is no legal right to a second opinion under the NHS, a request is rarely refused.
Step 19: try to understand the cause of the cancer
As with step 1, in a sense the horse has already bolted by the time of diagnosis. However, logic suggests that addressing what caused the cancer, where that is possible, can help the remedial process.
The World Health Organisation (WHO) estimates that a third of cancers originate in environmental or lifestyle factors; some put the figure considerably higher. Environmental factors include pollution and exposure to radiation, and lifestyle factors include excessive alcohol, smoking, diet and lack of exercise. Carcinogenic chemicals are everywhere and therefore hard to avoid but, with many of the other factors, it should be possible to change.
Some believe that stress can trigger cancer. Removing stress is easier said than done – and, of course, cancer and the financial worries it often brings are themselves highly stressful – but it makes sense to control it if possible.
The fundamental message is: if environment or lifestyle might be a factor with your child’s cancer, it is advisable to alter them wherever possible.
Step 20: be open-minded about complementary and alternative methods (CAM)
There is not the great divide between orthodox and complementary medicine that some would have us believe Indeed, some two-thirds of conventional drugs are plant-based: periwinkle, found in Madagascar, is the base of two standard chemotherapy drugs, Vinblastine and Vincristine; aspirin is derived from the willow bark. What matters is the evidence about whether something works.
This is a topic in itself and will be the subject of a separate excerpt from the book.
Step 21: be prepared to change your child’s diet and encourage exercise
Diet can be seen as a form of CAM, and most of the same considerations applied. I am convinced that diet has a real part to play with cancer.
Unfortunately, there as many diets as there are cancers, and I looked at a good many of them. Many are flatly contradictory; some are highly, and surely unnecessarily, prescriptive. It is important to recognise that food can be a real comfort when so much else is going wrong.
Drink is as important as food. As well as wheatgrass juice, Daniel had green vegetable and fruit juices. He took red grape juice until I discovered that pasteurisation would kill any benefit from the resveratrol it contained. He also had Acai berry juice, from the Amazonian forest and described as a superfood, full of nutrients, though the label is used lazily. Daniel also drank green tea, which is extolled in many parts of the world for its health benefits, including cancer. He would try to drink two litres of bottled water a day to flush out his system.
Allied to diet, studies suggest that exercise, with the increased oxygen it engenders, is an important part of the armoury against cancer. It can certainly help psychologically.
Step 22: be open-minded about positive thinking
Many regard positive thinking as important with cancer, although again traditional oncologists usually dismiss it. The link between mind and body is little understood but undoubtedly exists, in my view, with some empirical evidence in addition to reams of anecdotal. In an experiment by Dr Fabrizio Benedetti in Turin, volunteers who thought (wrongly) they had been given morphine did not react to previously painful stimuli. Dr Benedetti hypothesised that the volunteers’ belief that they were getting morphine triggered the release of endorphins and enkephalins, which then did the work of the morphine.
In a study of breast cancer patients at UCH, Daniel’s hospital, those with a positive outlook did better than the pessimistic. Other studies show similarly impressive results. One has to be careful about this sort of study, it is true: the categories are not exact and the picture is not homogeneous - a study in Australia involving lung cancer patients showed that positive thinking made no apparent difference.
We worked extremely hard to keep Daniel as positive as possible. If nothing else, I am sure it enabled him to cope better with the horrible treatment, and to embrace the dietary and other complementary approaches we suggested.
Step 23: adopt an efficient system of filing
This is really boring but important.
During Daniel’s five and a half year journey I amassed an enormous amount of information; filing was time-consuming. I’m afraid my approach was not kind to Amazonian rainforests. I do not like reading anything of any length on the computer screen and feared losing everything stored on my hard drive.
By the end I had around 40 lever arch files, crammed full of articles, meeting and telephone notes and emails. This was on top of all the books. The categories were fairly random, because everything overlaps in cancer, but an electronic index enabled me to locate things easily using a word search.
I also had numerous tables, setting out the pros and cons of various options and contact details. There were tables for CAM and diet. I copied and pasted passages from CarePages and Caringbridge pages (the US patients’ websites discussed in the book), so that I knew who had tried which treatments, and to record personal insight.
One of the tables was of the emails I sent. During the early months I was firing off so many that it was difficult to keep track of who had replied. The table enabled me to do so.
Naturally I kept all communications with Daniel’s hospital – meeting and telephone notes, scan reports, diagnostic
reports, emails, copy letters to GPs, information sheets. I kept a record of the numerous blood results.
My system would not have won any prizes for office administration but it worked pretty well for me and enabled me to access information quickly.
If you follow some or all of these steps, or adopt your own, it will not guarantee that your child survives. But parents can help to maximise their child’s chances. Of that I have no doubt. There is plenty of good advice out there. It is just a matter of identifying it and differentiating it from the less good.
Excerpt 2: How to research and advocate for your seriously ill child
A surprisingly large proportion of cancer patients take complementary and alternative medicines (CAM) or are on special diets.
Many oncologists are sceptical. One of Daniel’s doctors used to joke with him about ‘Dad’s magic potions’.
There is an assumption that, whereas conventional medicine is based on rigorous research, building from exhaustive laboratory studies to strictly-controlled clinical trials, CAM is a research-free zone, relying (at best) on anecdote and cod science. There is certainly truth in this. But it is only part of the picture. There is often painstaking research into CAM remedies too.
For example, I read numerous articles, by serious researchers, about curcumin and ashwagandha (remedies from the Ayurvedic tradition). The science was as dense as anything I read about conventional treatment. There is a developed branch of mycology – the study of mushrooms – looking at how they can attack cancer. I came across a well-researched book on CAM remedies for cancer by Josef Beuth, a professor of complementary medicine at Cologne University, and Ralph Moss. Like so many others, Prof Beuth freely gave up his time to speak to me. Dr Moss, a guru of CAM and a strong critic of chemotherapy, produces an useful, free weekly newsletter (though his expensive report about Ewing’s sarcoma, Daniel’s cancer, was unimpressive).
The problem is that traditional or diet-based remedies are usually not patentable, and therefore there is insufficient incentive for pharmaceutical companies to run clinical trials, which are extremely expensive. Occasionally, Big Pharma does see the potential of a CAM cancer remedy, as when the British company GlaxoSmithKline paid an astonishing $750m for a small Boston company which had activated the gene SIRT1 in resveratrol, the molecule found in red grapes. Some think that the gene holds the key to longevity (the cancer link is that ageing cells are more prone to cancer).
This is a gross generalisation but, whereas conventional cancer therapy introduces external agents into the body to attack the cancer (chemotherapy and radiotherapy) or cuts it out (surgery), complementary therapies seek to use the body’s own healing powers, in particular the immune system. I was surprised to learn that all of us have cancerous or pre-cancerous cells from time to time. The immune system usually deals with them before they become dangerous.
One often hears the phrase ‘boosting the immune system’ in relation to complementary therapies, including diet. The immune system is exceptionally complicated and it is naïve to think that boosting it (whatever that means) can by itself cure cancer. But the immune system remains key, it seems to me: in Daniel My Son, I set out my belief that immunotherapy – therapy which activates the immune system – will ultimately be key to the cure of cancer, or at least holding it in check.
Similarly, there is legitimate criticism of conventional medicine that it looks at symptoms and only the part of the body manifesting disease. CAM, by contrast, looks at the whole person. Since everything in the body is interrelated, that seems the correct approach, even if it inevitably adds to complexity.
Some of the larger cancer hospitals in the US, such as MD Anderson in Houston and MSKCC, have helpful websites, summarising the evidence about particular CAMs in a measured way. This presumably reflects the questions they get from patients but it shows a degree of open-mindedness which I did not often find among UK doctors.
I looked into everything, including faith and spiritual healing, but I retained healthy scepticism, too, resisting the temptation to jump too readily onto the many CAM bandwagons encircling the cancer world. These are my tips:
i. As ever, research as thoroughly as possible, and find out the people to trust. There are many genuine, knowledgeable people but unscrupulous practitioners too.
ii. If someone has something to sell, be especially cautious about the objectivity of their advice. To engender hope is important; to engender false hope is to prey on the vulnerable, and is particularly reprehensible where there is financial gain.
iii. Do not be blinded by science: some practitioners deliberately deploy complicated-sounding science, confident that the mystique of incomprehensibility will persuade some that the remedy in question must be good.
iv. Avoid the logical fallacy captured by the Latin phrase ‘post hoc ergo propter hoc’: ‘B was caused by A because B happened after A’. Many people fall into the trap: ‘I took x, I got better, therefore it was x which made me better’. They might have got better anyway, and indeed x might conceivably have slowed recovery. Correlation (an apparent connection between two things) is not the same as causation (A causes B). Overclaiming by proponents of particular CAM approaches is a frequent problem, though it happens with conventional medicine too.
v. Success stories are great for morale but may not give the full picture and may not be replicable.
vi. Be cautious about websites and magazines that do not give references for articles.
vii. Check with the doctors that a CAM remedy would not interfere with conventional treatment. CAM remedies – which are, after all, made up of chemicals – can interfere with chemotherapy, radiotherapy etc, by reducing efficacy or increasing risks. As with everything else with cancer, the science is complicated and incomplete. For example, some oncologists argue that the antioxidants found in many CAM supplements interfere with chemo and, especially, radiotherapy. This was a real concern for us with Daniel. Equally, many believe that antioxidants can enhance chemo and radiotherapy. My eventual compromise was that Daniel did not take certain remedies during radiotherapy or chemo infusion days. I am not sure how scientific it was.
viii. As Daniel’s journey progressed, I would go direct to the hospital pharmacists, because they knew more than the oncologists about CAM remedies. In truth, judgements were speculative, because the science was so speculative. For example, there was a suggestion in a preclinical study that curcumin reduced a patient’s platelets. By this time, Daniel’s platelets were a real concern, so I took him off curcumin while he was on chemo. Eventually, I bypassed even Pharmacy and relied on my own research. I felt I should take full responsibility.
ix. Be careful about dosages. One of the problems with CAM remedies is knowing the appropriate dose. Dosing is key with conventional medicines: Paracelsus, the German Swiss Renaissance scientist, noted ‘Poison is in everything, and nothing is without a poison. The dosage makes it either a poison or a remedy’. Scientists want to know the appropriate ADME of a substance – how the body absorbs, distributes, metabolises and excretes it. There are complicated disciplines called pharmacokinetics and pharmacodynamics. With CAM remedies, it is largely guesswork, and not particularly educated at that. If the dose is too small, any efficacy will be lost; if it is too large, there are risks to safety or of interfering with other treatment. I listened to manufacturers and practitioners and spent ages researching, but it was all a bit hit or miss. At one point, Daniel took piperine (black pepper) to aid absorption of curcumin. I have no idea whether it did any good.
x. Do not be put off by the fact that the evidence about a particular remedy is incomplete. The evidence with conventional treatment is incomplete, too; less incomplete, perhaps, but still incomplete. There was, by contrast, any amount of evidence about the failure of the conventional treatment on offer to Daniel; that was the whole point of complementing with CAM.
xi. Ultimately, make a harm:benefit assessment as best you can. Every decision in medicine is about weighing harms and benefits. The benefits of CAM remedies, where they can be established, usually fall short of a cure. In the vast majority of cases, the most one can hope for is a positive contribution, perhaps just the easing of treatment-related symptoms. Might a remedy enhance – ‘potentiate’, as oncologists say – conventional treatment? Equally, a patient might derive psychological benefit from taking something he believes is helping (the placebo effect).
xii. On the other side of the equation, with most CAM remedies and approaches, the risk of harm seems small. For me this was crucial. The smaller the risk, the less evidence about benefit I was willing to live with. But I was not complacent about harm, checking out everything with manufacturers and experts around the world, for example once speaking to the World Health Organisation about the level of metals in a particular supplement. Burden for Daniel – one more thing to take – was a harm, too, and financial cost is, sadly, a factor for many.
xiii. Focus on the complementary rather than the alternative in ‘CAM’. With serious cancers, you need the blockbuster conventional treatments. I spoke to a teenage girl with Ewing’s in the US who, encouraged by her father, relied on diet and something called PolyMVA. She had a bad experience with chemo (as had he with his own cancer) and so abandoned it. She died not long afterwards.
US authorities sometimes remove children from parents who wish to ditch chemotherapy in favour of an exclusively CAM approach. In one case, the child’s oncologist gave evidence against the parents, not great for relationships one would have thought. There have been similar cases in the UK too, such as in 2013 when a mother lost her legal battle that her son, Neon, should be treated with CAM rather than radiotherapy.
I rejected countless CAM remedies, though I allowed some to simmer on the back burner rather than casting them into the incinerator. But some seemed worthwhile. For the record, this is what Daniel took: curcumin, ashwagandha, astragalus (a Chinese herbal remedy), lycopene, echinacea, resveratrol, agaricus blazei (mushrooms), maitake (ditto) and various homeopathic remedies (discussed in an annex to Daniel My Son).
My overriding objective was to make Daniel’s body an inhospitable environment for his cancer. The remedies may have helped to keep the cancer at bay and, even if not, they may well have eased side-effects. Daniel generally tolerated treatment better than most Ewing’s patients, and that in turn kept treatment on track, which was important. The objective was a virtuous circle of nutritional and other immune-enhancing measures, weight gain, treatment tolerance, reasonable quality of life, positive thinking - all of which could in turn have some effect on his prospects. With cancer, vicious circles abound, so we were keen to fashion a virtuous one.
It requires the hard yards but I have no regrets about the approach we took and would do the same again.