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or "Diffuse Intrinsic Pontine Glioma"

This, the worst of all possible brain stem tumors, is rare with about 125 cases reported in the USA in a year and it affects the young, mostly between ages 5 and 10. So for a two-year old it is even rarer. 

The name says it all:
"Diffuse" -- it is spread among the nerves and tissues of the brain stem.
"Intrinsic" -- it is wrapped amongst them, making surgery or accurate and selective radiation virtually impossible. "Pontine" -- it is located in the pons (middle) of the brain stem.
"Glioma" -- the tumor arises from the glia, the tissues that support the neurons (the thinking cells).

The brain stem is the lowest section of the brain, transmitting signals from the brain to the spinal cord and converting instructions from the brain to the motors of the body. Tumours in the brainstem can be located in the cervicomedullary junction, the midbrain, the tectum or the pons. The pons is the most difficult to reach.

While radiation therapy can shrink the tumour and bring a temporary respite, an irremediable regression follows. The median survival rate is nine months.

St Jude's Hospital in Tennessee, an institution that leads research in this field sums up the current desperate lack of knowledge:

In their quest for a cure, DIPG children must move from one experimental protocol to another, enduring treatments with side-effects unacceptable with any other diagnosis. The cruelty of this disease cannot be denied. Sparing their cognitive abilities, DIPG slowly robs children of their motor functions resulting in partial paralysis, loss of voice and sight and finally ending with an inability to eat and breathe. It is both heart wrenching and painful as they are fully aware of their decline often until their last day.

We currently DO NOT know what causes brain tumors. The major causes seem to be chromosomal and genetic abnormalities. Research so far has statistically proved very few instances of possible environmental causes for childhood cancer. The Children's Oncology Group (COG) continues to conduct epidemiology, cytogenetic, and microbiology studies in their quest for answers.

Is there hope?
The outlook is bleak with any conventional treatment, and the best that can be achieved to date with radiation and chemo-therapy is an extension of life expectancy measured in months.
So, logically, we must look to the possibility of the unconventional or less explored protocols.

The Düsseldorf case:
As far as we know only one properly documented recovery of a child has been reported and this involved a two-year old in Düsseldorf. (See  The specific and unorthodox treatment was the administration of Iscator 0.3% (an extract of mistletoe) for three months, followed by Helleborus 1% for three months and then alternated over the same periods. There appears to have been a complete remission. Promising though this sounds, there has been no known successful replication of this treatment, making it more probable that it was either a very rare spontaneous remission or that the glioma had to have been far less aggresssive than average.
There is reasonable data that Iscator, the most commonly used oncological drug in Germany, can improve survival rates with cancers in general by as much as 40%, and its measured side effects do not appear significant. There are also toxins from other herbs, like purpurea digitalis, that have shown some promise in killing cancer cells. However there is a lack of comparative studies tabulated against specific conventional treatments to be able to truly assess thier efficacy relative to radiation and chemo-therapy.

There may be promise in another unconventional therapy, the administration of THC (tetrahydrocannabinol), the active ingredient of cannabis. This has been shown to promote autophagy in cancer cells, in other words encouraging the cells to consume themselves (see
Ketogenic Diet:
Used to control epilepsy, there is some evidence (based on experiments with mice) that this diet, by starving cancer cells of glucose, could reduce tumors. Similar to the Atkins diet in that it forces cells in the body to extract nourishment from ketones from protein and fat rather buring than carbohydrates, it is much more targeted in the precision to administer it. The theory is that while healthy brain cells can adapt to the diet, a glioma is dependent upon glucose for growth. The diet requires measurement of food in very exact proportions to produce a ratio of 4:1 of fat to total carbohydrate and protein.  It carries some risks, and there is, as usual, a paucity of data regarding results.
Click for summary info on ketogenic diet
 or  click here for more detail

Any choice of alternative treatment represents, however, an agonising dilemma. No treatment yet known offers the guarantee, or even the probability of remission. If the result of any such treatment is merely the prolongation of parental suffering with an even harder to bear conclusion only months or even a year or two later, we must be assured of a substantial enough improvement in the child's quality of life, or a very high probability of prolongation of life, to justify its pursuit.  Since nothing has been proven effective, it follows that any succesfull protocol will be experimental and untried.

Charlie's MRI report -- click to read


To learn more:

Just One More Day - a site dedicated to DIPG suffers

Ped-Onc Resource Center - a site by and for parents with children with cancer