Joshua Tree

A voyage

My child is part of who I am, so today marks the first year of redefining how I see myself and my role in life. It's been intense, and I am making progress.

Josh's ashes have been with the little memorial in the corner of the living room. (Weird term, 'living room,' in the context.) It was not intentional that we would keep them this long. We had ideas about what to do with them, but today it seemed right that we should put them out to sea. He loved the sea, and the wild, and here the sea is wild. He first saw the sea just before his 2nd birthday, and he was so excited at how the waves washed up and down the beach. He loved swimming forever after.

So on this gorgeous sunny day, after a spell of rainy weather, we set them adrift in the Atlantic, from the rocks at Llandudno beach. It was hard - felt like another stage of letting go - and maybe that's why we had to wait a year. This picture shows where his ashes started their journey. Go well, Josh, wherever it takes you.

Particpatory medicine

One of the challenges with finding alternative approaches to healthcare that you know are trustworthy is that new or unconventional forms of treatment often don't have the benefit of financial resources for going through published peer review processes that mainstream medical practitioners rely on. Here is a new initiative that might help. The nonprofit Public Knowledge Project in Canada has launched Open Journal Systems as a journal management and publishing system to expand and improve access to research.

OJS assists with every stage of the refereed publishing process, from submissions through to online publication and indexing. Through its management systems, its finely grained indexing of research, and the context it provides for research, OJS seeks to improve both the scholarly and public quality of referred research.

The Journal of Participatory Medicine will be published free online using this system to give patients a trustworthy tool for understanding their needs and conditions and encouraging them to participate in their own wellness. For anyone going through what we have been through with Joshua, you might want to find out more about the journal from this article by Kevin Kelly.

[via WorldChanging]

Questions

Having an explanation for things is something that gives us comfort. Whether it's an engineer needing to be sure that a structure will stand, or parents wanting to know why their child has died, the need is similar: we have questions, and we want answers. It doesn't make much difference that one set of questions lies in the scientific realm and the other (in our case) in the spiritual. Either way, we try to rationalise what we experience within a frame of reference that makes sense to us.

Learning science at school, it's easy to think of it as an objective set of answers that explain the world around us, but more important than the answers are the questions that led to them. The wrong question can lead to an experimental cul-de-sac. The right question can produce creative insight, and may open up a whole new realm of answers and further questions. Defining "the right question", though, depends a lot on what we are trying to achieve.

Often scientific questions are posed in direct response to a theory or idea we want to prove or disprove. This isn't wrong, it's the way we build our understanding. But it means that there is an agenda behind the question, and we should recognise that this is not a philosophically neutral process. Education, I think, should be more about the exploration of questions, and interpreting the basis of the answers. Just accepting someone else’s answers to our questions – or even allowing others to define the questions for us – can be dangerous.

Two weeks along

 

It’s just over two weeks since Joshua’s death. It’s very strange and almost impossible to imagine that life will feel right again. Sometimes there is still a physical ache in my gut. Things will have to plateau, eventually, at some new level of normalcy, but I think it will always feel like something is missing.

The first few days, when Josh was in the chapel at the Christian Community, were incredibly important and helpful for us in dealing with the initial reality of his death. It was a shocking state to be in, but it felt like things were manageable. We could sit quietly in the chapel, we could have conversations with visitors in the garden or the courtyard, we could have tea and receive food that people brought, we could talk with Richard (the priest) and we could go home or go for a walk. We could do what felt right at any given time. We also had a sense of purpose in processing what had happened, in consolidating our thoughts of who Josh was – the essence of his being – and in sending him on his way.

This is going to sound...

Paranoid. I don't want to be completely over-the-top-critical-of-the-medical-profession. So let me first acknowledge that doctors and nurses and medical researchers have done a tremendous job of getting us to a place where frankly incredible things can be done to overcome disease. But, as this New Yorker article by Atul Gawande points out, there is an odd dynamic at play in the relationship between doctors and patients that I have never seen in writing before.

I grew up thinking that doctors choose their profession because they have an innate desire to help people. No doubt many do, but I don't think one can call it altruism. Altruism is, economically speaking, irrational. Like buying solar panels for your roof because you believe it's good for the environment, even though it costs you more than buying electricity from the grid. Very few doctors are willing to practise if it doesn't earn them a decent living, and I don't begrudge them that. But if that is so, they have a conflict of interest between their financial desires and the health of their patients. There are many cases where preventive measures - which often cost the patient virtually nothing - would obviate the need for expensive surgery and medications. As I mentioned in this comment a few days ago, healthy diet and lifestyle choices can go a long way. So the question is, why don't doctors just tell us that? Gawande wrote:

Seeing a patient who has had uncomplicated, first-time gallstone pain requires some judgment. A surgeon has to provide reassurance (people are often scared and want to go straight to surgery), some education about gallstone disease and diet, perhaps a prescription for pain; in a few weeks, the surgeon might follow up. But increasingly, I was told, McAllen surgeons simply operate. The patient wasn’t going to moderate her diet, they tell themselves. The pain was just going to come back. And by operating they happen to make an extra seven hundred dollars.

If you want a theory on why doctors are increasingly relying on more expensive treatments than they did in the past, and why there seems to be an inverse relationship between the costs of health care and the health of a population, read the article. With South Africa now investigating a national health insurance system, it's worth considering.

The wonders of modern medicine

I cannot believe this. An American mother is on the run because a court has ordered that her son should receive chemotherapy for Hodgkins Lymphoma, and she does not want it for him. I don't know the background to this story, or what her real motivation might be, but regardless: it is time that the medical profession wakes up to the fact that chemotherapy is a blunt instrument that treats cancer as a symptom and ignores the causes. I find it astonishing that so much has been achieved in the field of medicine, and yet cancer patients routinely receive a form of treatment that is intended to go as far as it can in destroying human cells, while stopping just short of killing the patient. This is barbaric.

Joshua's treatment by the hospital haematology department ended because chemo had destroyed the ability of his body to protect and heal itself, and any further treatment would have taken him over the edge. His official cause of death was renal failure, which means that the chemo caused kidney damage so that waste could no longer be filtered out of the blood. The implication, in effect, is that by agreeing to chemotherapy as a strategy to kill cancer cells, we were committed to a path of no return. If the chemo did not work, the body's immune system and vital organs would be so compromised as to prevent recovery from the damage caused by the chemo - and that is exactly what happened to Josh. Our efforts to help him, during and after chemo, were focused on strengthening his immune system, his mind and his spirit so that his body would have as much as possible at its disposal in fighting both the cancer and the collateral damage caused by the chemo. But this was not enough.

It would be pointless to speculate on what might have been if we had known more at the start of this journey; but based on what I know now, I think it is ridiculous to force someone to undergo this kind of treatment when - despite decades of effort in cancer research - the mainstream medical profession still does not acknowledge chemotherapy's poor success rate and does not put more effort into studying the role of complementary treatments.

As we have discovered, there are many theories out there. Some of them are clearly crackpot ideas, but there others that seem logical and look promising. Yet in all the reading we did, it was extremely difficult to find authorative research that either supported or debunked the various treatments. Most documentation comes from those promoting the various products, or from independent people who do not have the resources to undertake extensive research that is on a par with that done by mainstream medicine. So we are led to believe that chemo and radiation therapies are the only scientifically justified courses of action, and are effectively forced - as with the American mother - to accept it as the only viable treatment option, when in fact this "scientifically proven" treatment is probably on a par with the mediaeval practice of bloodletting in its rate of success.

Wonderful tribute

The learners and staff at Michael Oak put on a stunning concert on Saturday night - Joshua's tribute. I was blown away by the scale and quality of the production, and touched by how many people cared about Josh. For the first time, we heard Josh's band play - guys, you were terrific, and I can only imagine how you would have sounded had Josh been with you on stage. And Josh's grade nine class put on a moving finale. Thanks to everyone involved in the production, the refreshments, the artwork, the sound, the lights, the organisation... and thanks to all who came to give Josh a rousing send-off.

I may continue with this blog, discussing how our journey continues, and related issues, so if you have found it helpful or of interest, please check back here every now and then.

A new beginning

After an excruciatingly painful and frustrating few days, Josh was taken to the hospital around lunch time yesterday, Sunday 17 May. He really did not want to go, and it was a decision that caused us, his parents, much anguish; but his condition had deteriorated beyond our ability to manage it from home. The nurses put up a drip and started the morphine, which calmed him down and eased the pain. We stayed by his bed as we waited for the doctor, who came at 16:30. While we were discussing the options for medication, Josh rapidly changed. For a brief period he was more alert than he had been since before the weekend. He couldn't talk to us, but he looked intently, deliberately at each of us as if to say, "I am going now, but it's alright." His laboured breathing became slower and his pulse weakened and quietly stopped at about 16:45.

The funeral will be held on Saturday at the Maitland Crematorium at 10:30, and the benefit concert that the school has been planning will now be a celebration of Joshua's short but beautiful life, that same evening at 18:00.

This has been a harder journey for me than I could ever have imagined, but Joshua has taught me more in the past month than I have learned in years, and I sense that we will learn much more as Lorraine and I deal with our suddenly reconfigured lives. Thank you to everyone who has been such a support to us and to Joshua. Through the dedication of many friends, Josh was able to live at home, with people who love him dearly, to the very last night.

Benefit concert for Joshua next Saturday

A big thank you for the wonderful support we've had over the past months from friends and family and people we hardly know. I will shortly be adding to the blog a list of people and organisations who have contributed in various ways. Meantime, I want to mention that in addition to the help of Ani Fiske (who first raised the idea of the Joshua Tree Fund) and the inspiring efforts of the people at Natural Medicine, Joshua's school is now going all out to raise money for the Joshua Tree Fund.

The school (Michael Oak Waldorf School in Kenilworth) will be hosting "The Joshua Williams Benefit Concert" on Sat 23 May at 6:00 pm, and children of all ages - from Nursery School all the way up to Grade 10 - are preparing food and refreshments to sell at the school's Friday market and at the concert. So if you are in Cape Town and would like to support Joshua on his healing journey, please come along to the concert. The event's facebook page is here, and includes a map of the school's location.

I also want to mention that Joshua's aunt Jeannette is training to run a half marathon as a member of The Leukemia & Lymphoma Society of Canada’s Team In Training, which is raising money for fighting blood cancers. (As if climbing Kilimanjaro wasn't enough punishment. What will it be next year, Jeannette? Everest?) You go, girl!

not as hairy as he once was, but...

In some respects Josh's condition is getting better: his leg is steadily improving, his sores are not bothering him, and he is more active than he was on the first weekend of this month, which was a bit of a low point for him. And this photo, taken on Saturday, shows that his hair has finally recovered from the effects of the chemo.

At the same time, however, his lymph nodes are very obviously continuing to enlarge, and the ones in his neck over the past couple of days have started making it more of an effort to speak clearly. While the resulting pain is manageable with the pain killers he has been using (only at night), the pressure from the nodes makes it very difficult to find a comfortable position, awake or asleep. He has managed the feat of sleeping sitting up, sometimes with pillows on his lap to support his head. He also has a sore in his throat that sometimes makes it painful to eat, and he is getting thinner despite a supply of liquid nutrients.