Warning... some fairly raw emotions in this post. I have been unable to reconcile all my thoughts on this matter - possibly these
conflicts are unavoidable. In any event, these were very real feelings and it may be helpful for those involved to understand.
At some point I plan to follow up with thoughts on how herbalists need to change their methods, but in July/August 2008 it was not
the herbalists whose establishment we were living in - we were living 24 hours a day at Children's Hospital, Milwaukee as Jaymun was fighting for his life after two more rounds of chemo had failed to get his relapsed AML into remission.
When you spend as much time in a hospital with such a fine group of dedicated individuals as we have been priviledged
to have working to save Jaymun, you start to view them as family. Extended family. Of course, as with any family,
you see the good and the bad. Family has responsibilities. Family has priviledges. Family helps each other. Family has conflicts.
We've given you, the readers of Jaymun's Journey a view into this family. And in this post I want to shed light as best I can on a
perspective the doctors have not experienced, and I hope readers never will personally experience themselves.
Before I do so, I want to again appreciate the team down at Children's Hospital Milwaukee. I have seen them in action
in the wee hours of the morning, on weekends, and holidays. Without sleep, celebrating and grieving, pouring their hearts and lives
to save others. Any complaints I have are more against the "system", and undoubtedly are shared by the very same people working
to change it from within.
They work, they serve, because they have a passion for caring. They announce that passion by taking an oath when they begain practice.
Physicians take an oath that has several themes - one of which is summarized by the title to this post:
Primum Succurrere ...first hasten to help.
As an aside: It is noteworthy that the original Hippocratic Oath
also included an strict injunction against abortion and euthanasia and
(of particular interest to me) a pledge to pass on their knowledge at no cost! (free college!)
must also have taken the Hippocratic Oath seriously (grin).
There is tension between the themes "Primum succurrere"
(first, hasten to help), and "Primum non nocere"
(first, do no harm).
Chemotherapy and Radiation treatments are striking examples where "hasten to help"
trumps "do no harm".
Even though oncology treatments may devastate the body, risking irreversable and permanent damage, nevertheless driving forward
with a chemical or radiation "knife" to catch a rapidly closing window of success has been the primary method of success in cancer treatment.
Doing harm is considered ethically acceptable in the larger goal of hastening to help. Primum Succurere
As parents, these are horrifying decisions to be faced with,
and Jennifer and I like many others soaked up the pain
and trusted the experts.
And we are grateful. Their efforts played a major role in saving Jaymun's life several times.
This website chronicles two years of those struggles and it is not my intent to recount them in this post.
Today I want to call attention to a shift in priorities that we experienced this July, and the emotions associated with that.
There are feelings of abandonment
when the primary focus in cancer care recedes from "hasten to help" to a more relaxed "do no harm".
When the physicians start to "give up" on your child, when they decide that their treatments
will not result in eventual cure. When the focus becomes temporary "quality of life".
Even if you, as parents, were a part of that decision, it still reminds you of
when the intensity of
care suddenly falls off, and you feel patronized - you start hearing comments like "we just want him to be comfortable".
You think: "Hey... where did the doctors go? Why aren't they coming up with new ideas and plans for cure?
Are they still thinking about my case or did they find somebody else more interesting?"
In the case of Jaymun, Jennifer and I were a part of that decision on July 10
but I still wasn't prepared for what happened the following weeks. Jaymun was recovering from his last chemo a month earlier.
He was vomiting blood clots, several attempts to start feeds failed, he had increasing reliance on morphine for pain,
fluid collections draining from his brain, brady-cardia (slowing of heart), erratic breathing,
an ileus with standing water in intestines, holding bladder fluids, etc.
Palliative care kept suggesting increased morphine, which I was fighting because I felt it slowed down his system.
On July 22 we were advised
Jaymun would not survive.
We were told his intestines would not heal because of lack of white cells to fight infections, and he would die soon.
Over the next days, there were several "sub-stories" that taught me how orthodox medicine applies "do no harm".
was the Vitamin E subject. After initial approval, the rounding doctor decided against
Apparently scientific studies
that showed specific help with intestinal mucosal injury were however
trumped by some studies that showed possible intestinal injury in premature infants. No matter that Jaymun was dying anyway - we should "do no harm"
It wasn't until I persisted ...finding this study: (mixed alpha/gamma tocopheral
) ..and suggesting that I would blend it with food to eliminate osmolarity concerns,
that they agreed. Primum Succurere?
was the Tylanol dosages. Jaymun was getting pre-meded with Tylanol for several other meds. Since Tylanol is hard on the liver and stomach I asked the pharmacist
why we couldn't group meds together to eliminate a Tylanol dose per day. She agreed and wondered out loud why that hadn't been done before and one of the staff
reminded her that the goal was merely to make Jaymun comfortable. In that case "do no harm"
meant "don't harm his comfortability, he is going to die anyway,
and the long term health of his liver doesn't matter anymore". Primum Succurere?
was the morphine button. He had a morphine PCA and we were constantly advised to push his button when he was uncomfortable.
It turns out that a side effect of morphine is bladder retention and intestinal slowdown - two things we didn't want.
So when his intestines would contract or his bladder hurt - his button would get pushed and further slow his intestines.
His death was on the way to becoming a self-fufilling prophecy.
It seems we had decided he was going to die, so we were going to now continue sedatation, even if that further sealed his fate.
Primum non nocere???
Thirty years earlier, when I was a little boy, I was taught common remedies for situations like this.
In my mind there was never a need to shift away from "hasten to help", for there were powerful healing remedies
that were not harmful
. I dragged a small refrigerator into Jaymun's hospital room, and started "round the clock" (hourly) doses of natural supplements
Aloe Vera, Vitamin E, Chlorophyll, Milk Thistle, etc. When he was in pain rather than push the morphine I'd hold him and pat his back.
Sometimes it was merely intestinal cramps, and sometimes he would suddenly wet my shirt with huge bladder release.
Each day we pushed his morphine button less, and within a week (7/22 - 7/28)
he was moving his bowels and walking about.
Jaymun had been at death's door, and we gave him the remedies the good Lord had designed in nature.
That is what parents do. Primum Succurere
I was so ecstatic about Jaymun's improvement, and showing him off to everyone, that I didn't stop to think what the long term ramifications of that experience
would have on my relationship with the doctors. It now appears to me that orthodox medicine has a sizable treatment shortfall between primum succurrere
and primum non nocere
There are powerful natural ways to continue "hastening to help" while still "doing no harm".
However, for terminal cases as priorities shift, rather than filling that gap with natural remedies, the medical establishment merely proffers the
palliative care team which attempts to alleviate mental and physical suffering. And so parents are left to themselves to wander into a medical "no-man's-land", desparate,
not only losing trust in their physicians, but many times in the face of active disapproval from the very ones they depended on to save them.
The feeling of betrayal is horrible - especially when you uncover things that "surprise" the medical doctors although they have been
common knowledge for hundreds of years. It is at that point that I remembered our admitting doctor in 2006
insisting that there were no supplements or special foods
that would help in the battle against cancer. Then you wonder, are
the doctors really "hastening to help" in the best way?
Is their adherance to "do no harm" really just an excuse to hide behind a liability shield while comprehensive natural practice is ignored?
The fact remains that if we had depended solely on orthodox medecine... Jaymun would probably be dead
The palliative experience feels very much like you are dealing with an establishment who has collected their money,
and is cleaning up - the fact that the patient is still alive is a curiosity. What? You are still here? Amazing! How do we explain that?
Physicians want to be treated with respect, as they should. But something irrevocably changes
in the relation
between parent and physician once you are told that your child should be "kept comfortable" while he dies - and then
you are left on your own to find, implement, and rescue your own child with commonly known cures.
It is very difficult to repair that trust. No matter how honest and sincere your physician is, the fact remains that
they were not of help when it mattered most. Remedies that were around for hundreds of years they either knew nothing about or
resisted because they depended on "scientifically proven" treatments. If that is the fault of the system they have submitted their conscience to - the "science" misdirected by drug company goals,
then they need to answer a serious question whether their oath is to God and humankind, or to the FDA and the insurance companies.
You start to question everything. I still am unsure if they sent us home on July 31
without first giving Jaymun a cell boost
because they truly felt that was the best for Jaymun, or if they simply thought he'd be dead by now anyway.
I would like to think there was someone who thought we really had a chance to help him with the natural
remedy "protocol" I had been assembling. If so, why wasn't I offered assistance and ongoing resources?
While I did not feel abandoned by God, I have felt intensely abandoned by the very ones who are educated to treat my son's disease.
Once you get a taste of palliative priorities, you always wonder if future recommendations are based on "keep him comfortable" or are truly
advising us of all emerging issues.
Afterwards, celebrating success together even feels strange. I'm not sure which is more odd, the physicians suprised that the things they warn against
actually saved your life, or the palliative care people who days ago wanted you to focus on pain management now excited that "we succeeded".
You feel like saying: "we"
didn't succeed. You
were focused on the wrong goal. You
were presented as a bridge to
smooth over the withdrawal from "hasten to help" ...but you
were a bridge to nowhere. Next time show up with some hope, genuine encouragment, and contacts for
alternative treatments, rather than telling other doctors in the halls that you think the parents are "struggling with denial".
The simple remedies I have learned (relearned in many cases) almost make me feel guilty. Guilty that there are children dying around me when they could be helped.
Parents we have met ask me for advice. And their own doctors are infinitely more qualified to care for them.
I am not a doctor. So I wonder... if I stumbled around as an uneducated person for two months
and uncovered powerful ways to heal Jaymun
that have been relatively common knowledge for hundreds of years, how much more effective shouldn't the learned doctors
be at this sort of thing? Are they truly free to apply their knowledge and experience?
The next time there is a child in danger of death from intestinal failure will they turn to
Aloe Vera, Slippery Elm, and Chlorophyll to soothe and heal his gut or will they give up?
I think about going to school - investing the 10 years of study to
be able to help others "properly" as a real doctor. But for what purpose then would I go to school?
So that I can likewise bind my "hasten to help" conscience by the "do no harm" regulations that keep physicians from truly practicing?
By the time Jaymun is ready for college, I want to be able to counsel him to dedicate
the gift of life God has given him to help others in the way that will leverage his heart, his talents, and his faith.
This is an open challenge to today's medical establishment to get ready to teach him.
A good start would be each doctor dedicating two months of their free time. Two months in which you would take
every herb sold at a reputable company, and go to Google Scholar.
Look up, read, and categorize every study about that herb (good and bad).
Then go to Sigma Aldrich and look up every bio-component of that herb,
and also organize the studies about that component. Read what Mayo Clinic and Sloan Kettering have to say (usually good research but many times six months to a year behind).
By the end of those months you will have a wealth of information, by virtue of your own experience, you will learn five times
as much as I just learned these past months. Then when you run out of traditional options to help, you could begin to employ naturopathic options in your practice.
Dying people are depending on you. Primum Succurrere