Jaymun Foundation
Cautious Advice
11/21/2010 to 11/2013 (took a year to write / edit)
I received another email a few weeks ago, from a desperate father whose daughter has AML
(Acute Myeloid Leukemia). After much treatment her doctors suggested palliative care as an option to make
her comfortable until
she dies from her cancer. I know how horrible he feels. Like getting kicked in the stomach when you
are laying on the ground after a long, bruising fight. So he started researching alternative cancer medicine,
herbal and other natural remedies,
found this site, and happened onto my entries back in 2008 when, for Jaymun,
we had first achieved complete remission
using herbal remedies!
Needless to say he was excited by the
research,
concepts,
medical records,
and dosage logs I had
assembled through Jaymun's home treatment. After he contacted me, we talked and shared,
and that process brought back quite a few memories for me.
Consequently, I had a few sleepless nights rethinking the past. Well, to be honest, most of the
"sleepless problem" was because I came down with four days of fever, chills, and cough ...but something
good may have come out of me being flat on my back for days, churning this all over again in my mind.
I think my perspective (or at least how I present my opinions) may have changed slightly since now about
a year has gone since Jaymun went to heaven. I suppose reviewing this again may be repetitive for old
friends, but there are new readers who are just now in the heat of their own battle with AML, and hanging
on for every nuance of hope. So this goes out for all those in the middle of the leukemia trauma,
searching for energy, feeling lost, alone, distrustful, or like a failure for their precious loved ones.
I have some lessons, serious cautions, and reality checks to draw from our own intense and heartbreaking story.
This past year is a challenge for me to explain - this year after Jaymun died. It is complicated,
and difficult to analyze. Most of what we experienced just couldn't be recorded, and for quite some
time I have had to stop posting on Jaymun's blog. Much of comprehending the loss of our son, and
dealing with personal, family, and business recovery is confusing and intensely private ... and these
things happen faster than they can be written down. It makes me tired and heartsick to again write
about some of these things, yet after talking with this other father, I see that he (and others like him)
may be helped by parts of our story ...specifically parts of my own personal battle this year. How it
was so difficult for me as a father to deal with treatment decisions both good and bad - both mine and
others. I suppose all parents who have made some of these major heart-wrenching choices go through periods
of second-guessing, but since I was eventually put in the position of being Jaymun's primary alternative
care "physician", I have a thousand daily decisions of Jaymun's treatment for the last fourteen months of
his life replaying through my mind, and there are huge questions I may never get answers for.
So I have had to acknowledge the inevitable mistakes that I myself made, along with accepting the
predictable human limitations of any team of parents and doctors. I almost envy those parents who are
able to exclusively vent at others (doctors), critiquing the medical system from the outside. It is
quite another matter when you yourself are personally responsible for so many individual, sequential
decisions. You need a broad perspective to continue appreciating the scientific tools and approach
of our modern health care system when there are parts of it that at first seem selfishly designed to
serve motives like politics, profits, or liability protection. It is challenging sometimes to keep
in mind that there are factors out of the control of physicians who themselves may wish to be able to
practice and talk more freely. To remember that a hospital needs to manage money and imperfect people
just like any other organization.
During a life-and-death struggle these ideas and concepts become so very real ...more intensely and
rapidly real than you can ever imagine. For example: you might "know" that ethical boundaries exist to
protect patients and doctors. But being aware of the concept is different than the understanding you gain
by experiencing it. They can tell you there is an ethical point past which painful and invasive treatments
are considered unnecessary torture, but those are mere words until you are in the
horrifying gut-wrenching misery of being told (2008)
that further treatment is worthless and your son will undoubtedly either die within a week from infections,
or within a month from cancer even if he makes it through the infections. And so, since his cancer is
untreatable, it is better to make him comfortable and let him go, than to keep fighting for him.
Everyone thinks that it would be unethical to torture him any longer. But how ethical does it seem to
let a child die, when every stone has not yet been turned over? Just because MD Anderson, Mayo,
St. Jude, etc. do not have any experimental treatments available ...does that mean none exist? What if there
are methods of treatment the doctors are unable to experiment with? And why, if you are attempting
those methods yourself, is it still considered unethical to focus energy on prolonging his life just
because the "professional judgment" has been made that he will die anyway? Just because the medical
system is not finished experimenting with taking NK cells out of the body, activating them, and
re-infusing them, does that mean you should ignore what you just learned ...that you can activate your
own NK cells just by eating spirulena (an algae), or echniacea (an herb)?
Is it only ok to actively prolong life for million dollar
experiments (that are proven to "only" kill 90% of patients), but not for twenty-five dollar treatments
that haven't been attempted in clinic?
Ethics becomes a personal dilemma when time ticks slowly by as you face the nurses (and your wife) who,
burdened with the doctor's conclusions, want to push the morphine button an extra few times per day to
reduce pain (even though you sense that every push is slowing down his gut and slowly killing him).
Try explaining things you have learned, but are not experienced enough to put into words, things that
give you enough hope that would make another day of alternative treatment worthwhile. Then try making
decisions and administering herbal medicines you yourself researched, designed, and prepared, all while
getting few hours of sleep per night. Then watch your son react by vomiting and see the betrayed face
of your wife and the pitying looks from the nurses while you immediately administer the same herbs all
over again, but slower ...forced to continue because you conclude you need to keep up the dosage schedule,
which schedule was not approved by any pharmacist but was specifically designed by yourself to determine
within as short as possible period of time the limit to which his gut could handle different herbal medicines
without vomiting, and what amounts would have effects (if any) on the lab results.
You start to second guess yourself when all the professionals seem to know better and/or shrug their
shoulders enigmatically. For example in 2008 even after my remedies helped (?) to rescue Jaymun's intestines (after they wrote him off),
and started moving Jaymun on the path to recovery, they said he would die from his still active CNS leukemia.
And even after we went home, discontinued all traditional therapy, stopped antibiotics, and ramped up herbal
therapy ...then when later his CNS leukemia started subsiding they said unfortunately his immune system would not recover
because of complete marrow aplasia. And even after we found herbs to stimulate his marrow recovery, they said he wouldn't
make an appropriate amount of red blood cells (but we found a therapy that worked to boost them), etc.
At some point you reach the point where it is hard to trust either advice OR warnings! I'm not saying
the "herbal professionals" are any better ...they have their own ambiguity. They give general advice
without clinical data backing up their recommendations. Traditional herbalists have this theory of
working to "balance out" the body, rather than achieve maximum bioavailable concentration with manageable
side-effects. It seems like the herbalists who know the least are the most excited about certain
"cure-alls", and the more knowledgeable ones are hesitant to give specific recommendations because they
are cautious due to liability worries.
The only remaining option for me was to get help directly from researchers, but
A) They have little or no direct exposure to patients,
B) They don't want you trying their drugs before they go through regular channels, and
C) They have their own liability concerns.
After trying and failing to get my hands on
experimental drugs, I was "limited" to public medical journals (pubmed), learning about
the cellular pathways,
what analogues were being made of which plants, how could I get those plants, how could I make
the plant medicines concentrated enough to get into Jaymun's blood, and past his
blood-brain barrier to target the "untreatable cancer" in his CNS.
At this point much of the medical system became a hurdle rather than a help. They wanted to
hear what I was doing, but as soon as I started talking about things, they started handing out warnings.
I realized they didn't really want to know what I was doing ...they wanted "plausible deniability".
And now that we were headed home (to die in a week or so with active CNS leukemia, completely neutropenic,
and aplastic marrow) I was made to feel like medical diagnostic procedures were a waste. Even when Jaymun
started turning the corner at home under herbal treatment and the cancer started subsiding, then throughout
those tense months where hourly treatment decisions by myself were so critical, it seemed (to me) that the
prior decision relegating Jaymun to palliative care meant that some (most?) doctors were NOT going to easily
approve (in fact argue strenuously against) diagnostic procedures that might support my experimental treatment.
While navigating our way through systemic "caution" (a strange mixture of sympathy, disbelief, and lecturing),
there were times when I felt on Jaymun's
behalf massively abused by the previous two years. And because it was my own son, my precious darling son
who was suffering, I would become anguished and furious. Watching him struggle, I was outraged at what I
perceived as previous, needless, permanent damage to him because of a systemic mindset that had resisted
change for so long. I had to work within the confines of Jaymun's organs ravaged by past failed traditional
treatment attempts (damaged brain, lungs, blood vessels, liver, intestines, etc.), and I felt that if only I
had been encouraged (and not discouraged) at the beginning to try herbal medicines by the very same doctors
now congratulating us for having success with them, his first remission may have lasted longer or even
permanently. The lack of interest in our medical/political system for concentrated plant supplement
treating of cancer from its earliest stages seemed quite haughty.
So I tried my part to help others by "publicizing" what we did for Jaymun (including trying to legitimize his story by creating a blog section to post his medical records and dosage logs).
And although the internet forums were generally full of scoffers secure in the "accepted" medical norms,
there were those like us, who were as desperate as we had been, who were attempting similar approaches,
and were having some success. However, as the inevitable contacts came from other families with terminal
leukemia, my own heart broke again and again as I also watched others try herbal medicines intermittently,
or as a last resort, and get only temporary results if any. I was sad and frustrated beyond belief because
I could not step in, observe, and document their methods, let alone assist, manage, and learn to prepare
myself for future battles. Experiencing their losses made me fear the inevitable return of the
Acute Myeloid Leukemia disease to attack my own beloved boy before I had the weapons or knowledge to fight
it properly. I began to wrestle with the idea that the "success" of our herbal treatment for Jaymun might
only be a temporary remission ...that because of my lack of knowledge and/or the mistakes I would surely make,
our Jaymun would suffer more at the hands of this beast of a disease than he would have needed to.
Don't get me wrong. My purpose here is not to "rip" on the doctors. There is enough for all of us to learn here. In fact let me break away for a second and give you my first humble advice ...about how to receive the suggestion of palliative care (making your child comfortable and giving up on "curative treatment").
Although you may feel deserted by that suggestion, look at it this way. When the doctors propose the option of palliative care, although they themselves might be giving up on the methods they know, they are not giving up on the child they know. They are humbly acknowledging their limitations, hopefully in time for you to savor final times, or even take advantage of experimental treatments. They could be blessing you in several ways.
The final days spent with loved-ones are irreplaceable. I suppose after losing a child, everyone will have a personal sense of loss (fighting too hard or not fighting enough), but know this ...that if you spend the last minutes right up to the end fighting medically, you may always feel like you missed out on some meaningful times. You need to appreciate the richness of the end of life together with your family. So much meaning packed into so few moments. Be wise as to how you fill those moments. You may have already fought enough and that is between you and God.
From the treatment perspective though, remember that your current cancer center may not offer the cutting-edge experimental treatments you need (depends where you are located in this world). If so, then by your doctors acknowledging failure, the door could open to new treatments at other centers. Many experimental treatments are only available to refractory (resistant) diseases and so other options may be available only to those in desperate situations like you are. In a way you could thank your doctors for giving up, because if they had kept plodding forward repeating treatments they knew were doomed to failure, they would merely be closing the window of opportunity to try experimental treatments.
So be prepared in advance for the possibility of that failure. If the doctors say your current plan has a 60% chance of success, then remember that means a 40% chance of needing to be ready to do something different. Always have a frank discussion with your doctors about any individual course of treatment BEFORE it is completed, about what the result will be if it fails. If they tell you that they will have little to offer after failure, then IMMEDIATELY start the research into experimental treatments at OTHER centers, rather than waiting until things are so critical and energies are so low that the mere days remaining are not enough time to go elsewhere. Your doctor can tell you other places that might have other options, or which centers can offer second opinions. And you can always ask for referrals to places like MD Anderson, St. Judes, Mayo Clinic, etc.
This is also the point where alternative treatments (like we chose for Jaymun) might come into play. Obviously we had amazing success with natural remedies and God smiled on our efforts to bring Jaymun into remission in 2008, giving us an additional 13 months (mostly spent at home). Heartbreaking as it was to lose him in October of 2009, I would go through it all again just for that extra time. Going to Disney world, playing with his puppy, walking in the woods, trampoline times, birthday parties, and watching Sponge Bob ...those are times I think we never would have had if we had cut short his remission with attempts at radiation or more traditional treatment. His body could not take any more stress like that. All that was left for him was what we did ...and it was good. It was the best palliative care available at the time. If I had more knowledge/experience (not blaming myself here ...how would I have gotten it?) I believe we could have extended that for many more months (years?). And I have watched other parents use herbal remedies to extend their child's lives also ...good palliative care that actually achieved complete remissions that lasted as long or longer than previous remissions from chemo / radiation.
Be warned, however, that alternative (herbal) treatments are not the magic answer:
* Even though for Jaymun we exhaustively tracked every herbal dose on spreadsheets, and described how we prepared them...
* Even though I formulated a methodology partly by reading medical journals and selecting herbs based on published studies, and partly by analyzing what worked and making adjustments as we went along...
* Even though I put hundreds of Jaymun's medical documents on his website (lab work, scans, etc.) to give some kind of validation to our story...
* Even though to an uneducated eye this might seem all seem like amazing science, and to desperate parents a lifeline - something that actually worked (concentrated plant supplement medicine doing the same work as targeted drugs)...
* Even though I still argue that there are many cases when oncologists should regularly include neutraceuticals (food medicines) in their treatment...
Still I would caution that there is no way to know for sure which supplements actually had positive, and which negative effects on Jaymun. That kind of definitive information requires years of study with multiple participants, control groups, etc.
Unfortunately that does NOT mean that you can relax and leave that completely up to the researchers, because it is NOT likely that those clinical trials (using food medicines) will happen under our current system - and maybe they shouldn't. Science is working hard to develop drugs that mimic food medicines (multi-kinase inhibitors, etc.) that target genetic "signaling mechanisms" without substantial damage to healthy cells. The old-school "quack watchers" who published invectives against herbal treatments under the philosophy that there was no way to get a high-enough "effective" (DNA damaging) concentration in the blood-stream without causing major side-effects should really make sure those haughty misleading "anti-natural treatment" articles are rebutted soundly and/or removed from the internet. Because the best new "targeted drugs" are actually following the lead of low-concentration orally bio-available plant supplements which target cell signaling malfunction rather than "relatively" selective destruction through DNA damage. Modern cancer therapy is now circling back around to exploit ancient cancer prevention methods. And it is quite possible that science may never create drugs as sophisticated as some plant remedies (for example like curcumin which I think contributed both to Jaymun's amazing remission, and also to the confusion leading up to his death).
Remember though, I am writing this in 2010 with a 2009 perspective, so if you are reading this in the months and years to come there may already be "targeted drugs" developed and tested that can add months (years?) to life. Drugs that are administered by doctors and medical organizations who are ready to support you through the long and tricky process. Being a doctor is an art and a profession, and one supported by teams of people who understand and compensate for each other's fallibility. So you need to understand clearly that if you undertake this effort (treating cancer entirely with food medicines), you are doing it at your own risk, with no guarantee that your experience will have Jaymun's temporary success. Unless our society dramatically changes, you have a good chance of the same frustrations, mistakes, and heartbreak we did.
Then there is the faith issue. Your faith might accurately be assured (as I was) of success back in 2006, and again in 2008. But eventually your very human heart might not be able to handle that God may be telling you He plans to permanently deliver your child from suffering. That since you won't give up, He plans to save your child from the disease, the doctors, AND from yourself. My heart couldn't handle that message in 2009. There is no way I can know what God is telling you, and you may not be able to figure it out yourself until afterwards.
Sorry for being so blunt but you may need to hear things like that. If you are considering using supplements similar to those we used for Jaymun, then you need to understand that there is no way to know how your child would respond to Jaymun's dosages. Your child has different organs, and different past treatment (different liver, gut, marrow, disease, etc.). You would not know exactly which doses he tolerated and which had negative effects. At the start I had figured out enough to be comfortable proceeding, and I believe God helped us with the rest as we went forward.
Yet even if God helps you for a while, giving you surprising success, that doesn't mean life is permanent or that you are home free. Cancer is a disease of aging, and even if you can temporarily find the right combination (like we did for Jaymun) of concentrated food supplements to support the immune system and promote proper cellular function ...you may not be able to reverse the aging that already occurred in the malignant cells (and that may be no more a failure than not being able to make Grandma 20 years old again). Even if you can make the stem or progenitor cells differentiate they still will occasionally create other root cells just like themselves that need almost perfect nutrition and stimulation to grow properly. And since cancer cells are incubators for increased DNA malfunction and progressive malignancy, it may only be a matter of time before you miss a few crucial doses of supplements (or your child gets sick and cannot tolerate the oral medicine), and the mutations in those cells survive and progress to a new, untreatable level.
This is partly why (for leukemia at least) bone-marrow transplants are thought to be so invaluable. However at this point (2009) for Acute Myeloid Leukemia, traditional treatment (chemo/radiation/transplant) also feeds permanent resistance in 50% of all cases (which in years to come eventually "blasts off" resulting in painful, traumatic, death). So that is what drove me back to the conclusion that the best hope for Jaymun was a "semi-permanent" palliative care in which "apoptosis dysfunction" or "differentiation malfunction" would be constantly regulated (green tea, resveratrol, quercetin, curcumin, Vitamin K2 m7 etc.) allowing cancerous cells to die or grow up normally rather than survive and progressively mutate, thus slowing or stopping the progression of resistance. My theory was that priming the immune system as a weapon to recognize and attack the cancer (reishi mushrooms, cordyceps, spirulena, etc.: interferon and NK activation), would be easier in a body that was not drastically weakened by cycles of destructive treatment. I thought I could periodically basically create a vaccine directly in Jaymun's own marrow by weakening his cancer and waking up his immune system. I thought that rotating frequent marrow growth stimulation with strong doses of natural cell cycle inhibitors and multi-kinase inhibitors would eliminate the need for destructive cycles of chemo. I thought that some herbal medicines worked better at treating beginning stage, and others later stages of malignancy; so by rotating them we might be able to even eliminate the cancer without needing the "chemo-knife" I was still promoting as late as June 2008. And I reasoned that in any event we were already admitting defeat if we were at the point where radiation and more chemo was required for Jaymun, and so our only long-term hope was to stay away from those methodologies which had already reached their toxic limit for him.
Caution: Remember here that your child is not Jaymun, and may not be in as tight a spot as he was. Your child may be able to withstand more traditional treatments. There may be experimental treatments available for your child. For your child it might not be as much an emergency requiring you to "fly solo", outside the realm of medicine our traditional system will support.
I think God has blessed smart people (doctors, researchers, etc.) with wisdom and if THEY are not giving up on you, be careful not to make life and death decisions based on only hope and emotions.
On the other hand, I somewhat fault our system for sometimes putting parents in an awful dilemma. You (a father or mother) shouldn't need to be a solitary hero here. Today's medical establishment should do more than pay lip service to herbal medicines. I am afraid some cancer centers lure patients into experimental programs with the added sales pitch that "they will give you information about the herbal medicines you may decide to use". But the physician is selling you on some "new study", and once you are enrolled, the demand will be that you stop using any other medicines so as not to spoil the research science. Or else you are threatened to be kicked out of the program if you deviate from their exact protocol. Something to remember (if you are already using herbal remedies) is that experimental programs such as more rigorous bone-marrow transplants are most likely based on increased stress and toxicity to your child's body. If you have already been using herbal remedies to maintain your child's health, then what that physician may not understand is that your herbal medicines are already supporting your child's body far past the point it could survive stand-alone cycles of traditional treatment.
Doctors would not want to be blamed for not understanding every herbal medicine you may have been using as a last resort. But then they should not be critical of YOU either for stepping in when the system has reached its limit. God gave your child into the care of YOU. You are your child's champion.
You already are your child's hero no matter what. You have already shared more ups and downs, heartbreaks and victories with your child than most do in several lifetimes. I know that being a hero can be intensely rewarding. And receiving miracles from God is humbling. If you are at the end of standard treatment, and if you decide to go it alone with alternative medicines, and if you achieve remission you will feel both highs and lows. There is nothing like the feeling of standing in the gap for your child and coming through. Back in 2008 I felt such a strong dual connection both to our Father in heaven, and to my son here on earth. I felt like I did the job He gave me to do, and protected my son - the boy He gave me. But I also felt like it all happened in a blur, and I knew that I could never have done it by myself. It was God and Jaymun who were the heroes of the moment and nobody cared about the past ...it was so sweet to see Jaymun grinning and laughing that we all congratulated each other.
But doing hero work can also break your heart. Joyful as success moments can be, this type of undertaking usually comes to a tearful end. Doctors are familiar with the heartbreak of feeling responsible for failures, but parents already have enough to bear without learning to cope with a medical failure also, especially when skeptics make them feel guilty, alone, and misunderstood.
Nothing can prepare you for how to handle a traumatic end to your child's life. No matter what early successes you have, no matter what things you learn flying solo, it will not seem like enough when the end draws near. The emergency room is like a hypersonic jet with spit second decisions having major consequences. Those of you who fly airplanes will understand this analogy. Imagine having only read about flying in books and having designed a new airplane in your head with a new set of controls, then suddenly waking up in your "modified" dream single-engine Cessna 172 (little airplane) in the middle of takeoff with nobody to help you. Ok ...it is a small plane and you manage a miracle: flaps, engine speed, etc. but then while flying in crazy circles you lose site of the airport. You figure out how to work the radio, meanwhile calming your family in the back seat. After hours in the air you manage to set course back to the home airport using skills you have just learned in this your very first flight. You have managed to escape some nerve-wracking unplanned flight maneuvers ...your roughly designed flight system has quite a few kinks in it. You are an hour out of the airport traveling at 60 miles an hour when suddenly your situation changes. Instantly you are in thick clouds and have no idea how to navigate by instrument. And with only 30 miles left your airplane morphs into a jet moving 300 miles per hour. Two co-pilots (ER docs) appear but they only know how to use the traditional controls which no longer work properly because of the modifications. So you spend the last 10 minutes up to the horrible crash in intense debates, unable to figure out what to do because it is impossible to think fast enough.
My point is that (whatever your local herbalist might say) treating cancer is not just strengthening the body "balance, nutrition, etc." A body with malignant cancer is a body seriously out of balance and one that will require a disciplined medicinal approach. If you are going to use herbs as medicines for cancer, it will be a prodigious feat just to learn new medicines that work, and afterwards make it through hospital stays, clinic routines, and gain some ability to secure and manage surveillance and diagnostic procedures to support your own treatment. Be humbled and thank God if you achieve remission after traditional courses have failed.
But if, after time passes, relapse occurs and you end up in the emergency room, things will speed up to the point it is almost impossible to manage. Even if prior to that point you had somehow navigated active treatment on the oncology floor, rounds, pharmacists, etc. ...the emergency room is a whole other animal - a frightening place. It is 24/7 and things change so fast. Everything you think you know may not apply. There are teams of doctors analyzing, making crucial decisions, and time sensitive interventions that follow tested rules and authority structures designed to minimize mistakes. There is very little room for error, and certainly not for solo experimentation. An intelligent doctor once told me the hospital organization is made up of "people, materials, and procedures and glued together with trust". He said that, as a parent, I had entered his organization and needed to deal appropriately with his people, and trust his materials and procedures even though they might not be perfect. Unfortunately, already a year earlier (in 2008) that same organization had failed Jaymun (or come to an end of what it had to offer him). So I had already made the choice for Jaymun to venture "off the grid" with our own set of people, materials, and procedures. So I tried to make this doctor understand that at this point it was ME (on behalf of my son) who now had now made the choice to temporarily include pieces of HIS organization, people, and procedures in my treatment plan. And so even though they were a thousand times more educated than me, I continually needed to evaluate everything to see if it was going to mesh with the few vital things I knew that they did not. I actually managed for a few weeks (by getting only a few hours of sleep) to run interference with each new shift of doctors/nurses, trying to learn as fast as I could, and trying to convince them through hours of talking about "evidenced based" research, that I had a credible hope for bring Jaymun into remission even if standard cancer treatment was not an option. To persuade them that they needed to put just as much urgency into saving Jaymun even though the oncologists were privately giving up. But that cycle beat me into the ground and I started making poor decisions. I just got too tired.
And God knows it was the best for Jaymun, poor little man. We were at the end of a long struggle and I should have recognized it and let him go peacefully at our home rather than gone back to the hospital. His body had suffered enough, he couldn't take any more. I would not want him here again going through more pain, when I am sure he is celebrating a million times more joyfully right now there than he ever did here. I suppose in heaven Jesus takes him around on His shoulder and Jaymun puts his little hands around His neck and plays peekaboo with God. I suppose Rey-Rey and Jaymun get to ride around on real, live crocodiles. I suppose they have merry-go-rounds with zebras whizzing through the clouds with angels who never get tired of Jaymun saying "one-time more".
But, you ask, with what I know now - would I do it all over, making critical adjustments and planning for a better result? Sure! Have I thought of other remedies (or more to the point better ways of delivering the medicines than through the gut or lungs)? Absolutely! Do I think that (with my current knowledge), I could have kept him alive for more months, or even years without ever needing more chemo / radiation? I think so. Would the extra time have been precious? Do you even have to ask? But God made that call ...and I have to trust He knew better. Because eventually the end may have been the same - for there is a limit to what can be learned and accomplished here on earth. And there is a limit as to the gifts God gives - especially since His final gift is to deliver us from this imperfect existence. So I hesitate to push other parents into this course of action because I know that
#1 Half-hearted efforts will fail,
#2 A full-court press may end them up facing the same impossibilities that we did,
#3 The end purpose may just be palliative after all.
Sometimes I ask myself the question "what good are the things I have learned?" I cannot assist other parents (be their doctor). And what have I taught others? The traditional doctors said they "learned something by all this", but I'm not sure it is going to really help them ...they will never practice this kind of medicine anyhow. It is probably illegal for oncologists to preside over "trial and error" hourly doses of concentrated herbal supplements.
So now I come full circle, because I am sure many parts of our experience are not unique. Other parents have been through these things, and the doctors have observed. Mercifully, individual doctors probably want to spare parents some of this anguish and maybe that is partly why they tell parents in the beginning that herbal medicines are unknown, and that the best hope lies in following approved and standard medical treatments.
Consequently, when it is all said and done, it makes no sense to blame either any individual doctor(s) or myself for Jaymun's death. There were enough complications to go around, and our unique situation made it almost impossible to predict or prevent some of these mistakes.
Last year I catalogued many things we could have done differently, but daily I think of more. Sure I disagree with what the doctors decided at re-admittance but we were all tired, it was late at night, and I was defeated and expecting a brutal hopeless final fight. How could they have known that besides stressing his liver, my herbal treatments had also stressed his gut almost like some chemo treatments would? I didn't even figure some of that out until later. And I did not know enough how critical little facts were like that Jaymun had started to mix up his days and nights (liver failure) so I never told them. They interpreted the cerebral edema as coming from tumor and brain bleed rather than liver failure and inflammation from immune stimulants. During admittance I was focusing on what their proposed new oncology regimen would do, while they detected a brain bleed and instantly shifted to "brain protection" mode and anti-inflamatory steroids. And so when the doctor asked me about dexamethasone and the Dilantin, I was too exhausted at the exact moment to argue. It wasn't until 10 minutes after it started that I realized what was going on and what it would do, and started protesting. Jennifer was so relived to be back in the hospital under standard care, that I just could not coherently demand that they take out the tubes and let us go home. You have all read the rest of the story. After two days in the emergency room the damage was done and Jaymun never recovered.
What I am saying is, while any doctor might wish he or she made perfect decisions, that is impossible. And you can't expect them to know how to deal with strange medicine. And it is easy to be offended by a doctor's personality or opinions - just remember that you yourself have opinions and a personality also that the doctors (or your spouse) might not always appreciate. And if you want to be treated like a colleague by the doctors then don't be offended if they criticize and make you prove your own theories. Because their job is to protect your child, just like it is your job.
And you will make your own mistakes. I did. By spring of 2009 I had Jaymun in remission, and enjoyed relatively full cooperation for regular surveillance procedures. I was the one who forgot to take concentrated Green Tea along on our Make-A-Wish trip. I was the one who gradually switched to rely more on immune stimulants and GVL (my "vaccination") effect than continuing the methodical (annoying to a three-year-old) multiple doses per day of apoptosis regulation herbs. I was second guessing myself, for I had all sort of people saying it might not be the herbs anyhow ...but just a spontaneous remission. I foolishly started to doubt everything, and thought we had it under control. I started to consider what everyone else was saying, that I was some crazy fanatic about herbal medicines.
After the cancer came roaring back in July (09), I had to fight tooth and nail to regain some semblance of control over his treatment. And I felt it slipping away as the months went past and the complications mounted. I felt responsible for starting this nightmare all over again. Although I was horrified by the unfortunate chain of complications that interrupted and complicated treatment in August / September, I kept remembering that the need for that treatment was triggered by my lax treatment schedule allowing it to come back months earlier. My advice: if you get remission with neutraceuticals, you should maintain intensive treatment for almost a year afterward. When Jaymun showed up in the ER at the end of July with CNS relapse, that event put the oncologists and I in a very peculiar position ...I wanted to wait a week or two to start chemo which I am sure sounded preposterous to them. Even so, they actually agreed to let me wait a few days, but then after I gave Jaymun an evening dose of powerful herbal immune stimulants and he immediately started having seizures which they said were coming from the CNS leukemia, I panicked (had never dealt with seizures before), and agreed to start chemo the next day even though the seizures stopped by the early morning.
At that point the doctors warned us about the risk of the Ommaya port but I was so tired of the tension and elaborate procedures around spinal taps (performed only up in day-surgery by an oncologist with full anesthesia) that I welcomed the idea of being able to see more easily what was in his CSF fluid. I figured a side benefit would be to get important life-saving information for the future about how the immune stimulants (various Chinese mushrooms) were able to project lymphocytes across his Blood Brain Barrier. I figured eventually I could get slides from some of those spinal taps and prove what the immune boosters did, so we would know how to fight this going forward for years to come if need be. Lesson to be learned here: Even if you have avoided complications for quite a while, do not begin to think that invasive procedures are automatically a walk in the park. There is a price to pay for cutting open parts of your body ...measure that carefully.
Another mistake ...in the last month of September, I was the one who laid off the raw dairy milk, Kefir, and intense pro-biotic support for his intestines. I was too tired to make the hour long round trip to the organic, grass-fed, raw dairy farm.
In any event, I do and do not blame myself for making mistakes because I remind myself of the huge success we had in 2008 and the extra year of precious time granted to our family. It's a bit hard to feel like I am criticizing myself constructively because I will probably never use this information practically again ...but for what it is worth to others it is here now. And I know doctors do not mind constructive criticism ...as I am sure they do to themselves on a daily basis or they would not be as good as they are.
And I believe God loves Jaymun more than me, and already left him a year longer with us than most would have gotten in our situation. Nurse Kelly had no idea when she sent the link to the song "He's my Son" that angels were already standing guard to follow the orders of the Almighty Father, Jehovah.
You see there is no concrete answer for those considering natural treatment.
Every year there are new and more powerful "kinder and gentler" targeted cancer drugs. A good choice is to first use the options available, and consult your doctor. I said "good choice" - not "only choice". There are many in the medical world, and especially in the more rambunctious blogging and forum community who might prefer I said "only choice", but you can't make everyone understand.
I think those people have never been in the situation where all the options the system has been able to carefully design and execute have failed. At that point, when you discover that there are other, very real (plant) options, you don't care that they have chosen to mainly study them by channeling them through the research system and eventually designing and testing drug analogues, this is your child and you can't stand the thought that there might even be ONE existing substance readily available that the clinical doctors will not work with. After all, isn't so much cancer medicine trial and error the way it is? Why not try the plant stuff? If they can try green-tea to protect a liver emergency, why not add it to a cancer protocol?
Hopefully your doctor is more recently educated and humble enough to admit that the reason they cannot recommend herbal cancer medicines is because they just do not know them. They might even be open enough to suggest you give them a list of supplements you would like to try and they will give you information about them. I started that way with Jaymun's team (in 2008) when they were near the end of what they had to offer. I was determined to not be "that kind of annoying parent". I was going to work with the doctors and discuss everything up front. So I made a list of herbs, gave it to the pharmacist ...but lo and behold one of the first most powerful supplements I suggested (curcumin) they absolutely warned against. There were warnings about almost everything I suggested that had any potency.
So I quickly learned that I somehow needed to evaluate these warnings myself because they did either did not know the risk / reward ratio or were hesitant to give me the upside advice. After all, they have risk warnings on their chemo treatments also, but decide to go ahead and use them anyway because of the potential rewards. And if their chemo treatments sometimes result in fatal side-effects, they do not instantly discontinue the use of the treatments. So you need to take those warnings seriously, but be able to evaluate them yourself. If there are known side-effects, then doctors are just doing their job warning against those side-effects of concentrated herbal medicines, even possible deaths, but their own medicines have side-effects and possible deaths also (they just know the percentage of success for their own stuff). So, before you venture into this area, are you willing to take things into your own hands and evaluate the valid warnings of your doctors? It would be better to find a naturopathic oncologist (if such a person exists) who you could trust and only mange the project yourself as a last resort. At some point, once I had proved the success of what I was doing, and the doctors understood I was going to use curcumin anyway, then they just maintained his platelet level at 80 (instead of 10) to compensate somewhat (even though that isn't perfect because curcumin makes platelets slippery - which is another subject for a different post).
Some more advanced cancer centers might suggest you enter their program and let them monitor your supplement usage along with traditional therapy. I don't think this means that they are going to be your naturopathic oncologist, and remember that they will present significant challenges to you being in charge of your child's program. In my experience and from those I have watched, I see several difficulties in this situation.
One - the more you learn the more you will want to think on your feet. The doctors will want information (studies) and an organized plan. For the sake of argument let's say you are able to come up with that plan. However, as you gather information, you may not be prepared to stick to your original methods. (Side note: I am not saying plans and structure are bad ...I've had real doctors with their own sick child plead with me to give them (the doctor) advice on a Saturday afternoon what herbs to give their child (because they were certain they were relapsing) ...even though new blood tests were already scheduled for Monday morning. They were sure they knew what was going on and wanted to do something right now. It was a surreal role reversal, as I was the one telling a doctor to wait for the updated test results, not to jump the gun, etc. Funny how emotions can change the decisions you make. I thought I had become somewhat immune to that trap, but at the end in the emergency room I started to make those same mistakes). Yet at times thinking on your feet might be the only option ...and if the doctors are leaving you with morphine as palliative care, and you have the energy and resources to take this to another level, they ought not to cause difficulties for you ...doctors are human - by that point they will be nearly as sad as you are.
Two - learning something on-the-fly is hard enough, but gaining the ability to champion it to medical professionals and respond to constructive criticism with lucid arguments is quite another. Do not bluff, and do not be afraid to say you are not sure exactly how something will work.
Three - It could be that your child's body can no longer survive the toxicity of more traditional treatment (chemo / radiation / bone marrow transplant). But if you have been effective with supplementation you may have rescued your child from things like a compromised liver, compromised intestines, etc. There are going to be some doctors who will get excited about some new treatment (possibly experimental) that they think might work, and your child may look healthy enough to them. However, like I said earlier ...be warned that the minute you get into a study, you will probably be required to drop the usage of all supplements to keep the study pure. Without special supplements supporting your child's liver, intestines, lungs, etc. his/her true weakened condition will surface, and you may quickly go back to the worst point of impotent misery that you have ever been in. Old permanent damage can stymie newer more aggressive treatments.
If you decide you are at the end of traditional treatment and you cannot find a naturopathic oncologist to direct you, and you still want to fight on for better quality of life with concentrated plant/food supplements then consider some huge questions.
How are you and your spouse handling this crisis?
A huge percentage of marriages do not survive the death of a child (looks like ours isn't either). Although time goes into slow motion, an entire lifetime of spiritual and emotional events pass by ...like an alternate universe of time and space. Brushing so close with eternity causes you to view your entire prior and future life through the lens of that experience. That magnifies short term mistakes and exacerbates common stress points ...blowing their significance out of proportion. It takes some time to get back to earth, during which the urge to make radical changes based on this "clear view" is strong.
Let me explain. During the normal course of marriage, there are times one or the other spouse just runs out of energy to deal properly with everything. Hopefully the other can be patient and temporarily accommodate for the deficiency (work, sex, finance, child-rearing, etc.). Possibly a crisis requiring sacrifice triggered this event, like working longer hours, or dealing with a prolonged sickness. During the course of many years, both spouses require accommodations at different times ...and they balance out - each supporting the other in times of need. Sometimes these times of taking from your relationship and asking patience of our spouse can be offset with giving in other ways. We all have different strengths and weaknesses. After fifty years of marriage, looking back you can both savor the success of a committed relationship that helped you together to weather the storms of life, raising children, loving, forgiving, building, laughing, crying, celebrating, etc.
But during times of great crisis (like a three year cancer battle) time is multiplied. Days mean weeks, weeks mean months, and months mean years. You might think "we are both busy right now ...I have no time for my spouse, I'll make that up later, surely he/she will understand. You might think that without even talking about it you are on the same page and so communication and relationship issues can be put on hold till later.
That is a big mistake. Because two months of ignoring the needs of your spouse here, is like two years before. And a year of feeling left out or ignored is like a decade. A crisis of this magnitude requires more communication, more unselfishness, more forgiveness, more love, more intimacy, more commitment. If you are a Christian, then this is the time to put your faith into action, sure your child needs a miracle - just don't automatically assume your marriage will also get a miracle or act so poorly so that it needs one.
Make sure your marriage is anchored in Christ, not merely in each other. Jesus has an unlimited supply of tenderness, patience, forgiveness, inspiration, etc. Understand that you do not get this love from God because you deserve it, but because Jesus deserved it. Treat your spouse the same way. A lifelong commitment is just that ...a commitment to stay connected to Christ so you will be able to hold up your spouse when they are weak. Do either of you merit the lifelong love of another human? Can either of you live up to that in your own strength? But Jesus promised that He will renew us throughout our life, and so looking to Him gives the foundation of love and sacrifice, and takes away the nagging doubts that steal our peace.
If your spouse is struggling with this, then here is your opportunity to put faith into action, and find many little ways to demonstrate that you love him/her, and are dedicated to making them feel supported as their partner for life. I believe finding the time to do this will actually make you both less tired and I wish I would have done a better job at this.
Can you together treat your child?
Treatment decisions are tough, and put their own strain on a marriage. I do not see how you would aggressively treat cancer naturally unless both spouses are completely on board with this course of action. Even then there are going to be some pretty high hurdles to clear.
#1. Objectivity vs. emotions. One spouse may be more objective and able to make decisions that hold the course towards a narrow window of hope in the future. The other might be more apt to argue for breaks in treatment based on easing a child's pain or discomfort. Neither is necessarily wrong, and either may be right in a given situation. If one of you makes decisions that either compromises treatment or ignores the feelings of the other, these "betrayals" can loom afterwards as a verdict on your relationship.
#2. Role blending: doc/nurse/researcher/parent. There are good reasons for different roles in health care. Although every doctor should be empathetic and every nurse insistent ...it seems to me that having more time with an empathetic nurse gives the doctor (with limited time) the ability to be brutally honest and insist on a painful course of action if absolutely necessary. The nurses might not be best buddies with the doctor, but they have learned over time to work together as a team. However if you are going to take the role of a doctor and your spouse that of nurse, your spouse may end up resenting your management of care and interpret your insistence as insensitivity. This is a tough thing to work out while your child's life (and your marriage) hangs in the balance. If there are major differences of opinion here, and your child is likely to die anyway, you may be better served to let the doctors do science, and save your marriage so your other children do not spend the rest of their life mourning the death of your marriage on top of the death of their sibling. If you allow your mutually sharing and supportive relationship to lapse, that will open the door for your spouse to fill his/her emotional needs with other friends that should have been met by you ...a very sad and dangerous pattern.
#3. Differences of emotional journey. One spouse may accept mortality and the other may wish to fight on. One person may be tired and the other invigorated. These roles might reverse throughout treatment. Any effective treatment requires a consistent approach and if you aren't ready to hold each other up and encourage each other in the course you have chosen ...together taking turns gathering supplies and administering medicine, then the emotional swings are going to isolate you from each other and the stress can threaten disaster at the most critical moments.
#4. Time. Spending time together is hard enough in a "normal" family life. If you both are equally passionate about naturally treating your child, then you will both appreciate the time sacrifices each other makes, and they will help build your relationship. Otherwise the time spent will be begrudged, and create barriers of perceived selfishness and misunderstanding.
When is enough enough?
For example: if your doctor tells you another BMT with TBI (months of horrible suffering) will have a 5% chance of cure - do you push for that slim chance? Or do you decide to enjoy what weeks or month(s) you may have before things get tough? Because they will get tough no matter what. Even if you are trying to hold on to good times, dying is not fun. It is horribly sad, and numbingly traumatic.
If you have gotten to this point, then you already know what chemo and BMT's are like. So by choosing to forgo any more treatment all you are doing is delaying inevitable trauma. I suppose you could say you are delaying the inevitable trauma and enjoying at least some good times (if your child is currently in relatively good health). But the trauma will come anyhow, dying will not be fun. There is no right answer to this question.
Will helping science (other families that come after you) make the end of life more meaningful to you?
If you are indecisive, there is one more consideration - do you want to die helping others (those who will come after)? If the proposed treatment (for example bone marrow transplant) has something new (experimental) as part of the protocol like immune modulation (interferon for example) or targeted drugs (kinase inhibitors) then even though you are only given a low survival chance, it might primarily be because there ARE no statistics yet ...because of the brand new drugs/protocols. So if you follow experimental options, then you are making the most precious contribution one can make to help save the lives of others while supporting the careful progress of science.
Thinking about those who come after is a positive way to approach whatever choice you make.
So even if traditional treatment is no longer an option ...and you decide to pursue alternative methods, there are things you can do to help those who come after.
Be organized, methodical, consistent, and transparent in what you are doing. Enlist help, be ready to sacrifice, and value time.
a) It helps to be some sort of engineer and to think analytically. Organize the medical information about your child and be able to explain it in terms that other medical professionals can understand. Be able to explain concisely the disease progression, complications, treatment plans, and prognosis.
b) You need to be ready to stick up for the supplements you choose. Reference the studies (like I did here) and be prepared to take some criticism. Point out that many of the medicines doctors use in pediatrics are not backed completely by studies either. And that you are making this choice because you have no other option ...that these are food supplements that have been used for thousands of years. Don't bluff or lie ...instead just say: "I don't know", or "I will be looking for the answer for that" ...write it down and then actually go to scholar.google.com and start searching. It is ok not to know. The doctors will often admit that they do not know exactly every effect their medicines have either. If they knew everything they would be God.
c) Understand and champion your child's fragile condition. What were the reasons traditional treatment was halted or changed? Worries about what organs? Get specific along the way. Have detailed, pleasant discussions with all the specialists as they float through your child's care (kidney, lung, heart, gastro-intestinal, etc.).
d) Get started early so your family and child will become accustomed to these herbal medicines. Stock an broad inventory as soon as possible even if you do not plan on using them for months. Take them in small amounts yourself (a little green tea, or quercetin are not going to hurt you).
e) Be ready to do more than just fight cancer. If your child has had traditional therapy or transplant, there is a good chance you have compromised systems and organs (gut, liver, kidneys, endothelium, etc.). Just keeping the gut healthy is a priority all to itself. If you are doing anything at all, start with something like mixing aloe-vera juice, liquid chlorophyll, and slippery elm tea (something like I did here).
f) Maintain extra supplies. You never know when some emergency is going to transport you to the hospital for weeks. Since you have to be your own pharmacy ...carry it with you.
g) Learn how to do things like place NG tubes yourself. If you do not have the will or strength to do things like this then this entire course of action is probably not for you.
h) Have a plan and stick to it. I reviewed my initial approach here.
http://www.jaymun.com/medical/aml-herbal-review.shtml
My basic plan was to keep alternating doses every 6 to 10 hours, to alternate the stimulation of two contrasting aspects for each of three different (overlapping) areas.
#a. ROS stimulation vs. antioxident therapy
#b. Differentiation vs. cell-cycle inhibition
#c. Immune Stimulation vs. anti-inflamatory
This was all done on a background of herbs that supported his gut, liver, and circulatory system.
I thought occasional higher doses of Green Tea were chemotherapeutic because of the antifolate effect.
On a four day schedule I wanted to spend day one and two with alternating each aspect of #a and alternating each aspect of #b, day three with alternating the two aspects of #c (and some of either #a or #b), and day four with a complete rest.
Here is an example of what I did ...I think August 11 through August 13 were some of the most effective days:
http://www.jaymun.com/medical/aml-herbal-regimen.shtml
Speaking of a larger plan, break it down into smaller plans ...it helps to write out a three day schedule on a spreadsheet in advance so you can relax for four days and follow through on what you started.
Again, this seemed to be effective (got Jaymun into remission) and predictible, until Dilantin came into the picture. I think Dilantin screwed up #a and #c. Read what I wrote here: http://www.jaymun.com/journal/2009_12_30
i) If you are going to try herbal medicines, be serious with your doses. Figure out how to give concentrated doses on schedule. For example: If I was dosing green tea, I would take a capsule of dried tea-leaf powder (which was worth 3+ cups of tea) and empty it into a single ounce of hot water. Then after a minute of soaking I would repeatedly draw and expel it from a small syringe, and then mix it with the other things I was giving, and push it through his NG tube. My idea was that concentrated tea would get more of the medicinal value into his bloodstream faster than just swallowing a capsule, or the contents by themself. See this page where I describe this in more detail.
www.jaymun.com/research/delivery-methods.shtml
j) Find out different herbs for each purpose, and possibly even different suppliers for each herb (it is good to rotate because the immune system responds more aggressively to changes). There are synergies among different herbal medicines, and there are overlapping purposes for each individual herb.
k) Be prepared to deal with the transition of the medical staff from active to palliative. Once they come to the end and you start to transition to home, they will get into the mode of helping you feel like everything possible has already been done for your child. This can make you feel like you just want to give up because you are all alone, and your efforts are worthless. Remind yourself that the roles are reversing, and their hearts are breaking also. If you had been an expert on this natural treatment, then at this point you might be able to comfort them. This is possibly the time when you need God the most. Turn everything over to Him. We were there July 23, 2008.
l) Take voluminous notes. Keep track of every dose. Better to do this on a private blog or website so it is available to you wherever you are. You never know when you might wonder what you did on what day, and what the medical condition of your child was at that time. The hospital has a wonderful data system that gives them that information at their fingertips. Some day they might open that up for parents, or at least have a parent section for notes and review. Until then you need to keep this information yourself. Keep track of EVERY supplement you give, when you do it, and take notes on little things (like vomiting, extra energy, lethargy, etc.).
m) Get some help. Have someone in your family learn your basic treatment and diet needs, and how to supply you. That way when you are tired you will not start making simple shortcuts that will mushroom into exponential compensations.
n) Stay away from discussing alternative treatment on Internet cancer forums. They are full of either survivors of traditional care, or folks who are still this side of palliative care, and who "know enough" to stay away from natural treatments. At worst they will accuse you of trying to sell products and hurt other people. At some point there might be naturopathic oncology communities, but I've not found them yet. And so the arguing there will neither help your confidence, nor your desperate need to maintain some kind of objectivity. And it will use up precious time your family needs.
o) Keep a blog. Your story is real to you. Videos and stories connected with medical data make what happens real for everyone.
p) Watch diet carefully ...every day counts. Even now, whenever I take a trip through Whole Foods, I again regret how many opportunities I missed to broaden Jaymun's natural diet. Especially if you achieve remission (like we did), then you should maintain diet vigilance for at least two years. I mean track daily portions and stay away from processed food.
q) Keep exploring new healthy food options. It would help if you could get your entire family to be a part of this process. You can all learn to be gourmet chef's together.
r) If you get to a stable place using the GI system to deliver food medicines, keep in mind it may be very helpful to eventually figure out multiple ways to deliver the same supplement in a different manner with the same results. Orally, inhaled, sublingually, rectally, poultice. Concentrated tea, drops under the tongue, herbal enemas, etc. If you end up in the emergency room with an intubated and paralyzed child, you may not be able to use the GI system or even the lungs (nebulizer). At that point you would have wanted to already know how your child would respond to medicines delivered in another fashion.
s) Don't let other priorities infringe on this (your job, volunteer, etc.). Find a way to say no, to as much as possible. And substitute it with activities that will advance your ability to help your child.
t) COMMUNICATE to your traditional doctors what you are doing. As hard as this might be (seeing their treatments failed), if what you are doing starts having success they need to know what to attribute that to. Otherwise they are making decisions in the dark. Having two separate decision making processes going on at once could be fatal to your child, or at the very least it will drive you all crazy with guessing what might be going on.
u) Be prepared for discovering predictable, positive results, only to be backed into the same heartbreaking corner doctors are (because of complications). Decisions, for example to either let refractory cancer blast off, or to administer medicine (herbs) that might have side effects your child's body can't handle. You don't know if your child is strong enough, but you treat the cancer and don't blame yourself if it is too little, too late, or too much.
Work on maintaining your relationship with your spouse, and your other children. If those relationships fall apart then for the rest of your life those failures will be a sour note, amplifying the trauma and loss incurred during this cancer battle.
Trust God. No matter what happens, He will not leave you. Remember that time is short and God knows the best time to take your child home and when there is enough anguish. In the middle of sickness and despair He can provide hope and healing. Even in the middle of death or divorce, He can renew beauty and purpose. Jesus overcame, so that mistakes and losses do not need to define your life.
So be humble and thankful whatever happens, and resist the urge to blame the system, and the doctors. Concentrate instead on education and supporting other parents like yourself.
