Simone’s Story: Infantile leukaemia  – 1987 experience – article written for a NZ Acupuncture workshop 2006

A holistic look at an urgent pediatric case

 

An issue of cultural diversity in health care.  We have a tendency to not examine our own inner programmes, and to go full speed ahead into ‘fix it’ mode- rather than observing and exploring the ‘why’s’ of the case . . . .

The dominant culture of Western Medicine tends to want to ameliorate – make it better, to dominate over nature – to take control, to act now – do something, to consider timeliness – sooner than later, to use therapeutic aggressiveness – stronger equals better, to use future orientation plans – that newer equals better and to standardize – treat similar the same.  This is seeing the apparent focus as being the issue, not the context as being a component.

What about why they are ill/what are the karmic – (reaping of past actions) – issues that may need addressing?

Looking now at the Tibetan Buddhist framework – as another medical model, that comes from the same region as our own medicine, in roughly the same time frame, we can see how cultural blindness has taken off.

In Tibetan Buddhist medical teachings, we need to consider karmic and evil spirit possession as very real and significant issues if we wish to be in any way useful, let alone holistic.  To really address and possibly the only way to overcome (if that is what we are attempting to even do) anything medical – we may need to widen our perceptions, regardless of how uncomfortable this makes the patient, our selves, or even our professional standing..

If we look to the issue of cultural diversity and health care, the culture of Western Medicine tends to want to ameliorate – make it better, dominate over nature – take control, act – want to do something, consider timeliness – acting sooner than later, with therapeutic aggressiveness – stronger equals better, equating newer with better and standardization as much as possible.  These all fall short of our medicine’s roots.

Originally, we accepted gracefully, balanced and were in harmony with nature, possibly applied a more wait and see, cautious and gentle approach, individualizing to recognize differences.

“Ours” as the recent acupuncture thrust – incorporating the Western Medical and the modern Chinese need to be seen to be current – wanting to emulate the western medical paradigm –

We still try to/want to

1. Make ‘it’ Better
2. Control over Nature
3. Do Something
4. Intervene Now
5. Use Strong Measures
6. Plan Ahead – Recent is Best – TCM and what is recently published/out of China ‘ wins’
7. Standardize – Treating Everyone the Same

We could ask – WHY?
Who does all that reactive business serve?

“Others” – where we were when I learnt in 1977/78, a more classical approach /preventative, possibly contemplative. . . . .

1. Accept With Grace
2. Balance/Harmony with Nature
3. Wait and See
4. Cautious Deliberation
5. Gentle Approach
6. Take Life As It Comes – “Time Honored”
7. Individualize – Recognize Differences

Both the modern university and professional entry standard with the TCM (Traditional Chinese Medicine – a misnomer as it is a homogenised dumbed down medicalised herbalised version of true acupuncture) focus and the rational evidence based perceived professional need to validate our medicine using orthodox tools has left graduates with little space to work in reality with the real and diverse issues that people wish relief from.

Possibly in the push to appear ‘respectable’ and not at all “New Age” or hippy like, we have thrown the baby out with the bath water.  The case I present today has all the markers of this.

SIMONE

Her case below.  I had no research that I could easily access – 1987 computers – and definitely home computers – were in their infancy.  Prior to this, one of my acupuncture students had her 8 months old baby diagnosed with leukaemia. She gave him a treatment or two daily till he was better. (He is in his late 30’s now) I figured –  I as the one who wrote her course – surely could also?

Having had a significant handicap myself in the form of a rehabilitation project ongoing within my own home, as 50 volunteers a week case in to assist with my own ‘hopeless’ case – my baby daughter Skye/Kathryn, massively brain injured and learning how to be a functional unit. What I did have was my common sense approach, honed as a teacher and healer of then 10 years standing, and my own daughter’s case as a template – anything is possible if you accept a wider picture, a multi dimensional world view, and ignore limitations.

Both the modern university and professional entry standard with the TCM focus and the rational evidence based perceived professional need to validate our medicine using orthodox tools has left graduates with little space to work in reality with the real and diverse issues that people wish relief from. Relief from suffering . ..

Here is what one mother/healer did when faced with the horror of another’s woes . . (whilst in the depths of her own) – I would think – if only Simone was mine – so easy to fix – when compared with a baby with a wrecked brain – Simone just had  a bad case of leukaemia . . that is easy – live or die, then move on – Kathryn at 26 is still here – and though much loved, is a colossal drain on all resources . .

Maybe it is time . . . .To focus on possibilities. .

This account of the workings of a small band of healers who chose to allow “God” / to not limit the outcome of an apparently medical foregone conclusion could happen in anyone’s life – so could the artillery of apparent ‘good’ be played.

Maybe ask yourself – what would you do, if it were your daughter?  Just what would you do if in the face of obvious healing, you were bulldozed into the dominant medicalised reality?  These are questions we all need to grapple with, as we are randomly called to account in our own lives, and then we may find that there is no clear ‘black’ and ‘white’ in real life.

As an acupuncturist who had worked at the edge of possibilities, I was used to being consulted after all other options had been exhausted.  Twenty years ago, my then husband asked of a work colleague “How is your baby” – the usual happy response of a ‘boy’ or ‘girl’ was tempered by the fact of his daughter’s imminent death.

My husband felt the need to offer solace, and said that he felt that maybe I could do something.  As at the time we had our own ‘hopeless case’ – our massively brain injured baby – we knew the desperation of having one’s offspring given up on. I suggested that I could treat her twice daily, for as long as it took, expecting to be offering comfort treatment, having no idea of what may occur – just that were I the child, I would have needed compassion, and comfort, and were I her mother; I would have been outraged and wanted someone to at least try their skills.

So, at 2 weeks of age, I saw Simone for the first time – a scrap of humanity, dying.  She had been born with advanced leukaemia, very small with a tiny placenta, and given no treatment and no chance of living past a month maximum. She looked out at the world with protruding bug eyes from a skeletal face, with withered limbs, a baggy bum, and a massively distended abdomen.  She had haemorrhaged within her first week of life, and when she came to me, there were spontaneous nasal and anal bleeds.  She had a weird red line encircling part of her iris, within the bright yellow “whites” of the eye, and was covered with small red dots, above the level of orange/red.

Whilst we would have not left an animal in this protracted dying state, due to her humanity, it was sanctioned, and apparently necessary.  Her parents were offered the choice of leaving her in the hospital to die or bringing her home to die.

Not wanting to limit matters, I decided to offer every chance of wholeness, combining healing on every level.  I set about launching a multi disciplinary approach, drawing on the differing skills and vibrational resonances that many of my colleagues were working with.  I figured that Simone’s spirit was very aware of the chaos and trauma that surrounded her and her parents and her first requirement was for a healing space to protect and surround her higher self to be afforded clarity and peace.

EXTRAS
In Brisbane so many volunteered – this was not me teh magician so much as me the outraged mother . . . I found a Reiki channel who was able to do absent and hands on work, a metaphysical counsellor who also worked behind the scenes, a vibrational master who concocted remedies, and a holistic doctor prescribed nutritional additives that also went into every bottle.

I thought I could see that it was just a drawn out conclusion and that as I had been called into apparently ‘hopeless cases’ before, the quality and quantity of life improved, but the eventual outcome looked the same.

Her mother had emotionally shut down, so also was not breastfeeding, and both parents were coping by smoking ++20 cigarettes daily, to the extent I often had to brush the ash off baby’s  face, before starting treatment.  Her father arrived twice daily, after driving the 25 km one way trip, and sat with me as I attempted to counsel him into going into bat for his daughter.  His major task/problem proved eventually to be the interface with the medical profession, as time showed that Simone was responding, and was attempting to heal.

ME

My initial treatment was intended to make her more comfortable, by addressing her perceived spiritual needs – the body only was broken – with all treatments geared to the present, averting apparent crises. I ignored the medical diagnosis, and informed Dad that I was not treating the cancer, but the fertile ground it grew in.  I was intending to return her being to a normal state of functioning, and would hand over the rest – to her Highest Good/“God’/life essence/whatever.

What I had to work on was spontaneous bleeding, green/red faeces, bright yellow urine and a bright orange/red blotchy skin.  Her first indications of receiving assistance, were that her hands and feet were less chilled to the touch, and her colour settled and calmed somewhat.  She appeared more ‘with it’ and wanted a bottle.

The ‘real’ patients were always her parents

Her mother hated me – a logical response – I was extending her trauma. (She totally bought the medical story – dad had hope)

Dad was desperate enough to try anything. To his credit, he never argued, only listened and drew his own conclusions – after watching healing happen regularly within our safe home space.  Neither had faced her imminent death, and over the days I tried to get dad to ring the various parent support groups, to work through what was coming up for them.

Within a week, Simone had a second major haemorrhage and nearly bled out. Whilst in the hospital, her father saw her death certificate on her file, filled out only needing a date and a signature for completion.  She came home floppy and listless, refusing all nourishment or water, looking pale as alabaster, with dull lifeless eyes.  She stayed like this, drifting in and out of consciousness for a couple of days.  She hung onto the thread of life, and eventually, her parents rang one of the dying-baby self help services.

With the intensive counseling given, and as they decided which music to play at her memorial, and what site on their property to bury her, the energy shifted.  As the parents’ perceptions altered, working through the trauma energy and moving into a clearer space, Simone seemed to be given the space to decide ‘what next?’

SIMONE

She started looking more alert and sought out a bottle again.  I suggested that as she had signaled her intention, it was our turn to fight for her.  I doubted that what I was doing with the various metaphysical massage techniques, acupuncture and moxa could affect the return to normal functioning AND fight the disease process with the minute amount of blood that she had left in her body.

I said – “Please go to the hospital and demand a transfusion”.
Understandably the staff were very reluctant to prolong the inevitable, but dad did not leave until she had more blood.

Her levels of awareness, irritability, appetite, poohing and sleeping were our measures of progress.  Her very distended, growing abdomen (liver and spleen enlargement) had distended her ribs, and they splayed out alarmingly.  All the while, her abdomen grew, starting her coughing trying to draw breathe in the limited confines of her bulging (three dimensional) belly contents.

Initially I used needles after the basic Tui Na (Chinese paediatric massage techniques). As she deteriorated, and after it took 15 minutes to stop bleeding from one of the ear points I had used, the Metamorphic technique – a metaphysical healing massage – was resorted to.  Each hands-on Reiki session changed her complexion from multi coloured to clear – it was remarkable seeing healing as we watched.

It became increasingly obvious, especially after I used advanced acupuncture, that immense amounts of good could be achieved, but we needed ‘real/tangible physical’ help also to complete the healing team that had been assembled.  Our immediate enemy was now the swelling organs that were stopping breathing.

Again dad on instruction went back to the hospital. Again the hospital did not want to prolong matters, as they felt the child should be left in peace to fulfill her destiny.  Eventually he left with a prescription for Prednisone, to assist the swelling.  Prior to the Prednisone, her belly looked as though it would explode – but after 4 days on the medication, the swelling was obviously subsiding, and after the second blood transfusion there was no more green pooh.

Weeks passed – the hospital social worker had rung to wonder how she was going – after all she was supposed to be dead by now. Then there were bone marrow tests and invasive processes – none with anaesthetic as it might kill her.  She was of great curiosity value.

Six and a half weeks after her initial treatment, she appeared to be in remission

Then the real battle began

Eventually a different oncologist (her main one was on holiday – the man who said that even if he thought he had I chance in a million to help her using it, the chemotherapy would kill her, at the best – just by altering her developing brain and future functionality) thought to start invasive treatment, as in his words – “Prednisone never cured cancer”.

Her mother finally decided that maybe the kid would live. She teamed up with the hospital solicitors and was going to kick Dad out of home, and have consents signed if he did not agree. I can’t imagine how Dad felt, as he had spent 3 hours of every day, for the last nearly two months watching his daughter return to health in front of his eyes, and being strengthened by common sense counseling, and acting to protect and save her.

When I went into the hospital to plead her case – to leave her to continue the healing that had been affected so far  – we got no further on in the discussion than “What is your medical qualification?”  – as if all that had been done to date was of nuisance value only.

This is not Hollywood.   There are no last minute saviours.  Although they were cast as such by our culture, and given free rein.

I never knew what happened next – after the ‘hopeless kid’ (left to die) went into remission, and they started to pump her full of toxic chemicals, after withdrawing all life affirming assistance.  We were not allowed to continue as we had, in case she caught an infection or haemorrhaged ‘with all of that traveling’ (as if she could have gotten any more ill than when she first arrived), and that our ‘treatment ‘ might interfere with their treatment.