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Spinal Tap Next Monday


9-29-2008

Jaymun is doing well - ANC 900+ today!

We haven't been able to post those neat charts with his blood counts since the charts I posted earlier this month, because someone at Children's Hospital noticed them posted here, and it is against their policy to release information in that format (even to parents). It is a pain for me to assemble that data myself - but since it is very helpful to watch trends and cross-reference supplements and the effects on recovering blood counts, once I get time, I'll make up my own spreadsheets from the separate printouts I get.

In any event we have already established distinct multi-day herbal regimens that significantly boost his counts. We plan to work more on boosting things through October, between pauses to make sure his immune system is able to fight cancer without apoptosis being inhibited by surges in natural G-CSF production (my theory).

The confusion around spinal taps / ommaya keeps swirling. I believe as parents we've put Children's hospital in an "interesting" position. Their job is to protect patients from unnecessary risk ...over the past month I've heard repeatedly that spinal taps are risky and the only way they would normally do spinal taps was "if they were actively treating Jaymun". They kept suggesting that rather than testing his spinal fluid (CSF) we simply use "clinical observation" and conclude that since he is doing well, whatever we are doing is working.

We had several replays of Sep 4 and I am becoming resigned to the roles everyone plays here.
The docs made it a bit more clear. They finally said point blank:
#1 They would normally be doing spinal taps only if they were actively giving chemo with those same taps.
#2 If chemo would have achieved CNS remission they would not have normally followed that up with diagnostic taps.
#3 They would never install an ommaya for ongoing monitoring purposes, only ongoing treatment purposes.
#4 Although Jaymun is not in CSF remission, since we are not doing active chemo there is no reason on their part to do diagnostic spinal taps. They are not actively treating his CNS disease. Their priorities are to keep him comfortable as his disease progresses unless we would decide to intervene with radiation.

However, as parents, we are treating his CNS disease with herbs, etc. and our priorities with that are not just to keep him comfortable, but to postpone (hopefully forever) the huge risk of radiation / 2nd transplant. We have several powerful botanicals (nutraceuticals if you will) that cross the blood/brain barrier (flavonoids for example), besides, of course, the endogenous cytokines, activated T-cells, and macrophages (thanks to the Chinese mushrooms) which cross already.

So we are not ignoring standard therapy, but the truth of the matter is that at this point more standard therapy (radiation/transplant) would be adding rather than subtracting risk to Jaymun, and has no promise of cure (see my comments in June back when we were still looking for experimental hospital therapies). That is why I think it is so crucial to measure the effect of the herbal supplements we are using so we can know whether to increase, or when to relax them.

We have been blessed to have precious, unexpected, "normal" months with Jaymun.

If we had tried radiation - these would undoubtedly have been miserable months with a high probability of his death. Instead, his CSF blasts have already almost disappeared from sight during a period where he was only receiving herbal supplements. We would not have confirmed the reduction without the spinal tap a few weeks ago (a spinal tap they had argued against based on their priorities). This is a unique time window and we need to maximize the effects of the non-toxic supplements while we can. On the other hand we can't keep an NG tube in his nose forever - putting in concentrated teas in the middle of the night.

Sure, there is risk involved in spinal taps. However, the risk of miscalibrating his herbal supplements and incurring the later harm of radiation, or death from cancer is higher than the risk of spinal taps. The doctors struggle to quantify that risk/benefit. They have no real way to evaluate our herbal regimen - Jaymun is a "n of 1" study with no controls, and being conducted by parents based on peering into research of botanicals that will not make their way into orthodox medicine for 10+ years (if ever).

I say "if ever" because you gotta love our fine system of government controls - the FDA gives dire, paranoid, knee-jerk warnings against things - no matter that they show benefit and are saving people's lives in other countries.
Check out what Margaret has to say. Also, just last week the FTC is attacking herbal companies for saying things like:
"the Chinese use mushrooms to fight cancer" and "Essiac Tea was used to fight cancer".

Hmmmm... Jaymun gets the mushrooms and components of Essiac. The FTC said "there is no credible scientific evidence that any of the products marketed by these companies can prevent, cure, or treat cancer of any kind".
Hmmmm... Possibly the people at the FTC do not know how to use Google or they would find studies like these?

This sort of thing gets me angry (with good cause) because the lives of little children are being compromised here. What are parents supposed to do when the doctors say their child will die? It stinks to high heaven that while other parts of the world are contributing mightily to the scientific body of evidence about herbal remedies, the FTC and FDA are spending their time and energy trying to block herbal companies from reporting those very clinical trials in other countries.
Sounds to me like haughty bureaucrats, greedy drug companies, and blood money.

So the FTC doesn't want herbal companies to say that the Orientals use other things against cancer. Where then would desperate parents like us go to find out what things were used in other countries once the good American doctors fail? Would the doctors tell them? My experience is they would not - see the post I wrote on Sep 7. Parents would go to the health food store and look at the bottle labels to see what the Indians, the Chinese, etc. used. Ooops... that's right... not if the FDA has its way. Because, God forbid, someone might decline the opportunity to sacrifice their life advancing "safe" science (safe defined as hair loss, brain damage, vomiting blood, poisoned, burned, and near death ).
Someone might try other things instead, and receive a better chance to live a more full life outside standard medicine.
Dangerous thought!

Ok. So it's easy to blame the system. Let's take it a bit closer to home. How many little children with relapsed AML in this country are being sent home right now on palliative care? I bet there are medical staff reading this who know a few.
At what point will you recommend those families to look at Jaymun's web site?

I could write pages more about this, but I'm not sure that is the tone I want to continue pursuing here.
There is too much good happening right now, too much to be thankful for.

And anyhow, after much discussion, it finally seems some combination of the following has happened:
...the docs agree some amount of surveilance is necessary,
...the neurosurgeons are lowering their risk warning against spinal taps for Jaymun,
...they are respecting our parental "risk/benefit" decisions,
...they are giving our herbal treatments the benefit of the doubt as effective CSF treatment.

Not sure which, but it is hard to argue with happy-go-lucky Jaymun as the "proof in hand" that something is working.
At least working enough to warrant helping properly plan the treatments.

So another tap is scheduled for October 6.

I know Jaymun's doctors and nurses love him and are working with us to do what is best for him.

We are still in the fight for Jaymun's life. The months we have here are a gift, and we are humbled by the knowledge that it isn't our strength any more than the doctors that ultimately keeps our little boy alive.

Humbled, and consequently working hard to do our part.

Thank you for your prayers.

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